A Little More Time Together: A Conversation with Donna Olivia

Have you ever wondered how artistry intertwines with caregiving? Today, we're chatting with Donna Olivia, a knowledgeable author, retired teacher, and caregiver who's been looking after her mother for 7 years. Brimming with Donna's deep-seated passion for authentic care, this episode uncovers her transformative journey, the lessons she's learned, and how she's harnessed her own power to become a more compassionate caregiver. 

We discuss Donna's book 'Grateful for Grace: Reflections on Caring for Mom' and her unique approach to caregiving, blending the journey with artistic elements that bring comfort and connection. As she talks about her mother's love for music and how she used the cultural significance of hair as a medium of care, you'll realize there's more than meets the eye when it comes to caregiving. 

Lean in as she shares how nurturing her mother has altered the dynamics within her family, giving way to a supportive system that has made her a happier caregiver. By breaking the stereotypes and reclaiming her power, Donna has created a new narrative around caregiving. Not only does she give practical tips for fellow caregivers, but she also lets us into the more intimate aspects of her journey - one that's marked by love, strength, and resilience. Get ready to be inspired and perhaps find a new perspective on caregiving.
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"Alzheimer's is heavy but we ain't gotta be!"
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Transcript

J Smiles : 0:02

Men, what do you do when you know at some point it's going to be you, like your mom or your dad, if you want to hit that critical point, they're going to get sick and while you have siblings some kind of way, what do you do when you know at some point it's going to be you, like your mom or your dad is going to hit that critical point, they're going to get sick, and while you have siblings some kind of way, you're going to be the one You're going to be the one to probably take mom or dad in. And it's not that you're waiting on the shooter drop, you're just waiting on the door building. You're living your life fast and furious. You know what I mean. You are like dancing in the street upside the wall, you kicking it, you got that passport thing, but any minute you're like I know this is going in and I'm going to have to take care of my mama and I ain't going to even be to be mad with nobody. It's like going to be my turn.

J Smiles : 1:51

How do you even handle that kind of knowing and that kind of knowledge? Who you want to have that kind of knowledge? Well, today's guest Y'all. It's like she had that kind of magic knowing like a tell all ball. Y'all remember the eight ball. Here we go. Parenting up caregiving adventures with comedian day smiles is the intense journey of unexpectedly being totally responsible for my mama. For over a decade I've been chipping away at the unknown, advocating for her and pushing Alzheimer's awareness on anyone and anything with a heartbeat. Spoiler alert I started comedy because this shit is so heavy, so be ready for the jokes. Caregiver newbies, ogs and village members just willing to prop up a caregiver, you are in the right place.

Donna Olivia: 2:53

Hi, this is Zeddy. I hope you enjoy my daughter's podcast Is that.

J Smiles : 3:02

Okay, a little more time together. A conversation with Donna Alina. Our parenting up community is growing so fast I can't put out a pep or so as fast as we're growing. So text podcast to 404-737-1449 for updates, exclusives and suggestions on topics. While you're at it, share an episode with a caregiver you love, review on Apple Podcasts and follow us on social media. Subscribe to our YouTube page, please. It really helps.

J Smiles : 3:37

Today's sponsor is the outside been open Tour DC, chicago, new York, houston, atlanta. You better get your tickets. Parenting up family. You know how sometimes great things just fall in your lap. That's what happened to me and therefore you're about to get the benefit of what fell in my lap. Yes, our guest today is Donna Olivia. She's an author, a retired teacher, a fierce dancer, a proponent of the arts and a caregiver I mean a super caregiver. Her mom is her heart. I'm not saying that. Her daddy and her husband and her siblings don't matter, but listen, after the end of this episode you go understand what I mean. Like mama, you know what I mean. I don't know Nobody. Better push hard and ask her to her face who comes first. I think they should Welcome Donna Olivia.

Donna Olivia: 4:51

Thank you. Thank you, so glad to be here. Thank you so much.

J Smiles : 4:56

I wish I went by a double first name. That just sounds so cool. It's Regal Donna Olivia, did anybody ever call you do?

Donna Olivia: 5:08

No, but, and remember, I created that. Well okay, they're actually my, that's actually my name, but I finally embraced my middle name because that's what my would call me, especially if I was in trouble Donna Olivia. So that's that's how I just said. You know what? Just take it, Just take it.

J Smiles : 5:29

You know what? Okay, remember everybody listening all over the world. I'm a comedian, so here it goes Bring back your power Right. A few years ago we heard we're going to take back our time. Representative Maxine Gordon said I take our own back, time back. And so, and there's a whole sector within the African American I say black community in the United States that with the inward right, with the inward, they say, hey, you know what, if we use it and we take back the power and we use it in a more loving manner, then it takes the thing out and kind of, what you're saying is hey, you know what, I'm going to embrace it.

J Smiles : 6:24

It used to be a term that my mom called me when I was in trouble. Now I'm going to use it and that's going to be my name as an author and as an expert and as a grown ass woman to say I've arrived, I love it. I love it. Olivia, yeah, olivia. What I don't know Is that it I still have. I mean, you know what, I'm going to work on that. I still have my flashbacks for having my first and middle name, j Marielle. Yeah, okay, I'm not ready, I'm not ready, I'm not ready, I'm going to work on it.

J Smiles : 7:06

So your book, I enjoyed it so much. It was a sweet read. Right, it was a sweet read.

J Smiles : 7:19

As a caregiver, those are rare. So many books that are out there that touch upon the journey of caregiving are at opposite is, in my opinion, one end is they're beating the over the head with some scientific something that I'm supposed to do or try or watch out for, and the other end I'm I'm marred down in the sadness of what happened, grateful for grace. That's the title Reflections on caring for mom. That's the title and that is the. That's actually what the hell the book is.

J Smiles : 8:10

You know, sometimes book titles are the. You know it's misleading. It's like the man that they ask you to go out on a date and then the check come and he looking for you to pay for half. I'm like, brother, listen, I didn't, we didn't. We didn't have asked each other out. You are a hundred percent asked me out, so you should a hundred percent pay for this check. Anyway, your title is actually what the book has in it and that's why I call it a sweet read. There are no points where I felt so heavy that I wanted to throw the book at the wall. How did you decide on the title?

Donna Olivia: 8:53

Well within this journey. Jay, I'm not medical. I am Dr Don Olivia, but that is not a medical degree. It is a degree in education and curriculum and instruction. I knew that I'd probably be my mom's caregiver, but some things happen to cause that title.

J Smiles : 9:18

Hold on. Oh, I saw. I saw what was that. I got to take a moment. I haven't met your mama, but I know so many women in the village like her. You can't slide by that. You have a PhD Now. Come on now, you know, come on now. You have what they call a terminal degree. After all, the time with terminal is celebrated. Okay, okay, okay, all right, all right. Congratulations, dr Don.

Donna Olivia: 9:47

Olivia, thank you, yeah, that mom did play about the education piece. So, and once I started caring for her, so again, the doctor is not medical I did not know anything. I barely knew the word Alzheimer's. I'm like, okay, what do I do? So I realized early on that I was going to have to be spiritually lit. Sure, there's a medical team. In November It'll be seven years from mom on hospice. But I needed some three o'clock in the morning help, and while I know there's a number to call, sometimes you need it more immediately than what it would take for you to get through. All the channels will hold on. Well, let me get this, they'll call back and all that. You need those immediate answers. So I sum that up to be God's grace, that's number one, and then number two my mother's name is Grace.

J Smiles : 10:53

Come on now. Come on now. Yes, did you double dip it.

Donna Olivia: 11:01

So that's all God got on. Yeah, yeah, and that's how it all depends.

J Smiles : 11:10

I will circle back in a moment on seven years in hospice. That alone is a journey so many people, as soon as they hear the word hospice, they think, okay, 10 minutes until a person is going to be in heaven or purgatory. I'm Catholic. I have three options. I'm Catholic purgatory but they believe it's a very imminent ending to life on earth. Seven years is an example of the fact that hospice can be a phenomenal opportunity for care or the family to have the time that they need and the resources that they need. But I want to get into that later. How did you all decide your mother had Alzheimer's? How did that come about? What was going on with her that made you even need to get her checked out?

Donna Olivia: 12:20

Well, we did not knock any of us. None of her children actually lived in the same city. With the random visits and an occasional question that didn't seem quite right or a statement, we never compared notes. We didn't see any reason to really compare notes. But when the neighbor started calling and saying I had a kitchen, you know, was on fire because we had lost my stepfather in 09 and the two of them were like two peas in a pod. So the question was whether mom was going to be able to live alone after some of these behaviors started. So, after going through a list of people, including a nephew, a church member and all that who lived with her, my niece said stepped up one of my sisters' daughters, my oldest sister's daughters. She stepped up and said I'm going to take care of grandma because I promised grandpa I would. Now, for such a young person, you know, of course, that took my heart, but she did exactly that for as long as she could. She moved, lock, stock and bell her whole family into our home and when it was time for me, I knew my time was coming.

Donna Olivia: 13:38

When it was time for me to take mom in 2016, it was the same year I retired my niece had started the process these, I'm telling you, I guess we get this education thing. Honestly, we're looking, searching, digging, so she's no different. So she was looking for all kinds of things services, help, anything like that and the service was able to be transferred up here in Georgia. She asked me to listen to the representative from hospice. I said, oh no, darling, no, no, no, no, no, no. We're not doing that, we're not doing Auntie, would you just please listen. After you listen and then decide. I'm like, yeah, all right, I will. I listened and the lady convinced me enough to at least try it, because after I knew I was locked in, I decided I would try it, and I can't say that I regret it at decision to this day Seven years. That was November 2016, and November in two months, it'll be seven years.

J Smiles : 14:56

So your mother has been in hospice care the entire time. You've been her full time caregiver.

Donna Olivia: 15:04

It is correct. Wow, now to another point that you asked, though after looking at the behaviors and starting to become more educated about Alzheimer's, it was she had already started having them long before they, long before the all would say, we just didn't know. You know, she might have been a 10%, 90, then an 80 by the time we came back again. You know that kind of thing.

J Smiles : 15:42

Yeah, in your, in the layout of the book. One thing I noticed and I greatly appreciate it, was that the end of each chapter you have a summary. It's more of a I don't know how, I'm gonna tell you how I took it and look, and then you go ahead and share with everybody what you meant, but you are giving us nuggets to think about, you give, you give like their an adult, and you use the word care and see a R? E and they have. I don't want to give too much of the book away, but anyway I want to read one of them.

J Smiles : 16:34

And we care graceful care is at the end of each chapter and so you say carefully, consider that's to see, avoid perhaps are reflecting your feelings E enrich your experience. And then, based upon whatever you were describing or talking about in that chapter, you encourage the reader or you give us a prompt. I should say how did you come up with that? Because there's one thing to say hey, I'm just gonna talk about my caregiving journey. And then, at the end of talking about my caregiving journey you know, taking mom to the grocery store or how we decided that mom needs hospice Okay, that's the end of the chapter. But no, you give us these prompts and scriptures to ponder which shout out to you just because you don't ever really know. You don't even write out the scripture, you just say it's a scripture to ponder and you just give us the chapter in verse and then, hey, if you wanna go get it, go get it. If that ain't your thing, then turn the page.

Donna Olivia: 17:54

You nailed it. You nailed it absolutely, absolutely Okay. So may I make a comment on that? Let me start with the scripture. It's very convenient to write it and print it. King James version and the millions of other versions there are, they're just far too many. So go get your Bible, the one you read from and you look at and take that. So I didn't wanna get into that, but I did want that piece there, and it's only to consider. There's several others. Those are some that jumped out at me. You know that resonated for me.

Donna Olivia: 18:37

Then the care tips graceful care, that's gently nudging you or encouraging you to do such and such, because I can't, I don't know your journey and I have to know that our journeys are different. So some things will work for you and some things will not. So here are some things to consider and carefully consider. Consider them with care. Yeah, so I gently say you know, think about this. You may want to journal. When I heard someone tell me the other day that they were journaling now, I mean my heart just lit up. I mean that's how the books start, because that, you know, and it wasn't to write a book, it was so that I could remember what to tell my brothers and sisters. But that mom did that. They are what had you, but the suggestions are things that worked for me and they might work for you, so you nailed it Well, thank you.

J Smiles : 19:44

It's the spirit that you are repeatedly suggesting. That's why I call it a sweet read. You know, and that's how I can tell you are really a caregiver. In these damn trenches, donna Olivia, there are so many people that come with their finger point and wagging in the air. At least that's how I receive some of their language. I'm just going to say it as somebody who's also been in the trenches where I'm like, hey, it doesn't sound like you have swabbed nary a mouth or wiped nary a butt, you know, or had to redirect nary, adult loved one, with the way you talking to me and you know I can't even hear you, but it's your language and you know. When you say to ponder, I was like oh my God, hell, I'll ponder anything. If you want to run for a city, we can talk about that. After this episode I'm like maybe Congress should ask us to ponder stuff and then I might listen to them a little more on C-Span they weren't barking at me.

J Smiles : 20:53

Tell us about incorporating the arts. You are a dancer, and then a few. I remember I saw there was one example when, early in your time as an educator, there was a time where I guess you I think you were more in being an apprentice. I don't know what. I was an educator, I was an engineer before this. Don't shoot me. In this area we call it an apprentice, but not like 45. Ok, ok, not like 45 on that show. So anyway, the instructor stepped out and you were talking with the kids and you were teaching them the times table, I guess 5, 10, 15, 20. And then you jumped into dance as a way to really get them involved and by the time the teacher came, the head instructor came back. They were ready for Soul Train or American Idol and had it all there. And you said since then that cemented your belief how arts can be incorporated in not only in education but in keeping things fun and informative, that's exactly right.

Donna Olivia: 22:16

You are describing an experience I had during my internship with a group of first graders and she was trying to teach them their fives or something like that whatever it was, fives or twos and I did it with movement, but I had to tread lightly because I didn't know. I don't want to get in trouble breaking any rules, but when she was out of that room, that's how we did them, and when, of course, she returned, the kids couldn't wait to show it to her. Look what we learned, look what we learned. And she was like, wow, ok, because it was just Skip County and but that, along with it, just it spoke so much about my mother's upbringing for us Piano lessons at the rec center, dance. My sister older sister actually Now my two older sisters are actually the real dancers. I just ended up making more of a living from it as a retired dance educator, but they are the dancers, both of them. But I use it now. So let me tell you how I use it with mom, and it occurred to me that that's what I was doing For the most part. Mom was very dramatic, and not every morning I felt like getting up and going to do what I had to do, but for her I had to play a role. Good morning, miss Gracie. How are you? Whether I felt like it or not. So that's the drama and that's real to me. That's real to me. The dance thing Come on, mom, get those hands going. You know how he used to move, so we just go on, get some music on.

Donna Olivia: 24:07

She sang in the choir, so we had that piece going. I'm going to go to the visual arts. I'll get to the singing last. The visual arts. Now, where in the world could that possibly matter? I got so wrapped up in caring for her wounds Now, not every wound, but for the most part I couldn't rip the tape. I had to cut it. I needed for the tension line and I needed for my bandages to look just so. So it was like an art piece of artwork, and I did some other creative things that were really helpful for her. So that's the artistic side, the visual art side.

Donna Olivia: 24:45

Now, truthfully, the singing Mother told me she said, child, you cannot sing. Ok, so I had to embrace that. But for her sink I would sing Amazing grace, yes, I would, and just for that moment she would take it, because that was what she had. So, but she had already told me a long time ago I could not sing. But I even would sing to her if I thought it would comfort her and make her feel better. So that's my artistic side. Yeah, you are just so tickled.

J Smiles : 25:25

I am laughing because I'm not alone. I'm not laughing at you, I'm laughing at myself and with us, because hunting, hunting, ok, as so many of the people in the comedy community say on stage, the number of things that I obsess over in the care of Zeddy, like you described about the cutting up the tape, how you have to cut it and you can't tear it. It has to be cut just so. It's a presentation, ok, ok, first of all, I know your mama went to Ebony Fashion Fair. The twins were fine, ok, I don't remember their name, rob, whatever. Do you remember Ebony Fashion Fair? I remember, yeah, and it was the two male twins. Listen, the two twins. Ok, everybody, all the girls went to see them. I don't even remember them now. I mean, I don't remember their names anymore, but you know the way that looks and if you could see the way right now, as soon as my mother became incontinent and I was trying to figure out a way, how could I have her, her, how do we have her sleeping, knowing she is incontinent, and have it look appropriate, my royal queen, ok, she's the queen of Zumunda to me, or bigger than the queen of England and all of the Americas, of the whole world.

J Smiles : 27:00

And I did eventually get the Purick, which is the male I mean, excuse me, the female catheter, but guess what, guess what? Dr Donna Olivia, my mama, took that thing out of where it was appropriately placed and put it under the crease of her boob. I'll write it, ok, ok, so I wake up and go check on it. I'm checking on the Purwick, ok. So now she has a little bit of urine under her boob and all of her butt in the bed, because it wasn't supposed to. It was not where it was supposed to. I said so. I say you know what? What she said was what you're not going to have is something phallic between my legs all night. Okay, cause I'm a good Catholic girl and I'm not doing that. So, anyway, so if you could see the precision with which I trim and cut the adult underwear to place it on her so it looks almost not like it's an adult diaper, you know what I mean? I'm tucking and curling it almost so it looks. It ends up looking like a bikini, honey, you know.

Donna Olivia: 28:32

And no, he's gonna see it, but we see it. What means a window? Yeah, she don't even see it.

J Smiles : 28:42

But I'm like if she could do it, she I think she would be nipping and tucking it like I'm doing it. So I was laughing because I'm with you, girl, I am with you on, you know, the oddities of what can get us through and make us feel better as we are parenting up. I love that. I love that you said a little bit about tell us about brushing your mom's hair, or that experience of hair for all women all over the world, every I have one thing on my bucket list that I've already checked off, or my life list, I should say, was to travel to all seven continents. And while, technically, antarctica does not have it's not a country, you know, there's no developed culture there Every continent, every nation, every community I've been to all.

J Smiles : 30:03

The hair of the woman matters so much for different reasons. There's a different historical reference point, but it always matters the hair of the men. It doesn't matter at all whether the men have hair or not, but our hair has some amount of glory to it. And so when you spoke in the book about brushing her hair and what it means and how you tie that to how being a caregiver, being a caregiver you can still use that as a way to connect and give them. Okay, you talk about it.

Donna Olivia: 30:50

Yeah, get special attention Now. First of all, my mom's hair was so fine and soft her hair just called a cotton that's how soft her hair was when it might take someone an hour and a half or two to get their hair done. I mean her hair just could do her in about 30, 35 minutes because it was like it dried easily, washed easily. She said it and sent her on her way and she'd have, of course, these beautiful silver curls. But what I knew she liked, because I even have a picture of my son and he was about I don't know third or fourth grade brushing his grandma's hair, because she would get you to do that in a minute if she could.

Donna Olivia: 31:35

So brushing her hair was soothing and if that's what, between that and rubbing her back, I knew that it would work and she would wear hats if that hair wasn't right, but she loved her hats anyway. She doesn't love her hats, but it was just the most beautiful silver, gold, gorgeous curls. Just did you ever want to see soft and wavy? So it was nothing to just stroke through it, you know, the brush was getting right to the scalp and it was just very soothing for her and it was a more, maybe even intimate moment in that sense because we were connected. Either she was remembering, she might not have said that, but either she was remembering us doing it or the feeling, or both. Yeah.

J Smiles : 32:29

I love it. I love it. Memories it's a struggle for us, especially when it's the same gender situation. I think it's a little something to it if it's the same gender. I've had guests on where it's a son and a father. I'm a daughter with a mom, as are you. And memories where your mom is struggling. You see her struggling. She may not remember your name. She asks you who are you. You try to tell her.

J Smiles : 33:18

Potentially there's some tension there, but you have great reflections on your own growth. That is magnificent how, within the book, you don't only allude to where you are now. You say hey, you know, when I say day one I did a, I did a. Today I'm doing P, you know I've made some steps. Yeah, and give us a little bit about how you've handled the memory. I was really touched on the examples of how you said you you kind of can know when you hit something based on some of the moans or the sound she may make. She may not be audible, but you can tell from her body language or her eyes. Sometimes you may not get it right, but at a minimum you may know what not to do next time.

Donna Olivia: 34:29

Exactly. Well, again, drama expressive. So I go straight for the face. Now, if I touch somewhere on the leg and it's hurting or whatever she might, because she can still do that she can't speak, she might pull that leg back, but I get most of my communication. It's, it's visual and it's in our face. It's got this little crease up here and I'm like, ok, something's wrong. But if that's all smooth, I know I'm good to go.

Donna Olivia: 35:03

Sometimes she's, you know, flutter those off and it makes you at least stop and pay attention because you got to. Either I have to reflect on what did it mean back then, and I might be able to bring that forward to this situation, or I have to create a whole new meeting. I may even have to be at a whole new meeting, but she cannot say I'm hurting, I'm telling like right now I'm hearing that says either that's enough, you fed me enough, don't put anymore, or what happened. And those are signs and signals that this is no class, no learning along the way. Nobody said now, when she makes this sound, be prepared, because that means this. You know, I just had to figure it out and, and the way we were raised, you were, you found yourself figuring out. I'm not sure. I'm not sure you know what she meant. When the blood, the brush came flying across the room with that left hand, you knew what, that you were in trouble. But there are things that she wanted a life lessons that she wanted us to make sure. She wanted to make sure we got. She wanted to make sure we got it. But, yeah, she would do little things like that, even I mean see her hands tremble a little bit now, or what have you? And I'm trying, what does that mean? Okay, something, oh, there's something under here.

Donna Olivia: 36:28

The other night there was some kind of discomfort with her and by the time I got to a bedside, guess what her canula had come out from her oxygen. I'm like, oh my goodness, and for some reason I couldn't sleep. And when I got to her bedside, I guess what her canula had come out from her oxygen. And I was sitting there and for some reason I couldn't sleep. And when I got to her bedside, that's what it was, that's what it was. So if we're not getting it straight from her God ascending it, but he sends the signals I have to reflect back on things from the past so I can bring them forward and use whatever I have, whatever tools I have in this, in the journey, because I don't know what the CNA trained, and I don't mean the CNA trained that I could have gotten. Of course I didn't know about the time, but I mean the side that won't be in the book, that won't be in the lesson, that that's taught, right.

J Smiles : 37:37

Rightly relating to you. You just gave, just like you did in the book. The book is a sweet read and you just gave me a sweet word. I had to take quick notes just so I was listening and I was like I got to take notes on my response right now Over here. Dr Donna Olivia, so it Apparently the hairbrush has always been important to your mother.

J Smiles : 38:07

Okay, because I caught what you put down, that it came. Your mother, your mother, is a South Park. She might have been able to get one in on Muhammad Ali, mike Tyson, because they didn't neither of them did that great with South falls, so that's amazing that that was her tool. And I remember In your book you comment on it, it wasn't, it wasn't built, it wasn't switches, but that brush. Better look out for that brush, baby. If you see the brush, mind your manners, because the brush might see you Exactly right. And what you Stated Harkens back to Keen observation, which, those of us who are in the trenches, that is what gets us through Keen observation of our LL Through time.

J Smiles : 39:22

What does the fluttering of the eyes mean? What might the trembling of the hands mean? What might this moan, a high pitch moan versus a guttural moan. They are communicating. They are communicating. They are communicating. What you see in the yellow is telling you something. You know a shoulder shrug, or you know a you know, all of a sudden, there, if they're shaking their head no, real fast, they say is nothing. They are attempting to communicate something. No, it is not Standard mainstream language. However, or those of us who care for them, what is the best way to communicate? If we have utilized Keen observation along the way, like you mentioned, we can bring the past forward. We may not get it right every time, and that's okay, but the point is, from your sweet read Is to recognize that that's the best tool we had Is Keen observation and our gut into wish.

J Smiles : 40:30

Yes, you couldn't sleep well that night. Something woke you up, said hey, let me go see, first and foremost, what I want to champion and say to the caregiving, to the parenting up, caregiving community that I say all the time, everything, every move that I've made in my mother's care, those big ones, not chicken or fish today, okay, I'm talking about those main care moments where her ended up being, where her life was hanging in the balance, like what you're saying, that the oxygen was off or not properly engaged. Something was just in my belly, the Holy Spirit. Something was in my belly that said hey, forget the doctors, forget your other family members and J forget what. You don't know. It doesn't matter that you're not an expert in this field. What you know is you got to do something. Go ahead and the answers will come. You got about the bed and you went to go look, don't ignore it. So you know LO's caregivers. Don't ignore it. It doesn't matter that you might not know what's going to happen or what you're going to see. Just get up and go and see and get there. You'll get the answers. You'll have the strength and the wind beneath your wings when it comes around. So thank you so much for alerting all of that to us.

J Smiles : 42:18

I laughed when you said you realize, sometime after your mom. You were like your mom was sharp as a tag, dad was doing his thing and you were like, listen, your dad was a dietitian and mom was a school teacher. How were they doing this thing? And you're like I figured out. My mom was shopping on sales. She never told you that. There she is again, teaching you something about the value even of money. You don't have to go give people all your full money. How has that continued to inform you, even in being her caregiver? How has that impacted you?

Donna Olivia: 43:08

Well, so glad you asked. Yes, even now, just even shopping for myself, of course that has just carried over, but I look at her needs. I can, I'm sure, run and pick up all kinds of miscellaneous things, but fortunately the supplies are handled by hospice. So because they handle that, I'm able to buy equipment or items that they don't supply. I have something to help me turn her in the bed they don't supply that and when I find that those items make life easier for me, I'm wanting to share that idea. You know what, when you get to one of your other patients, tell them about this. I don't want to say that it's going to definitely work, but so then I don't mind for whatever that cost is, or maybe I can put the investment there because I'm not having to get the things for her medication or her wipes and gloves and all of that, because they're handling them. So that's how I balance. That's kind of like my sale, like, oh, I didn't have to buy that this week, so let me see what else, what other drink and whatever, what other just gimmick or gift or item I can find that's going to help me with her and those items I have been so tickled about. Because, again, who knew? And I ran across it like, oh, let me try that. Oh well, that works really well. That didn't work. I'm able to do that. But with mom's shopping, this is how she knew when to go, what to look for and how to everything. It's like things were earmarked. Things were earmarked OK, I can do this, this model. I can do this because I'll catch it on sale Now, with the exception of the dresses.

Donna Olivia: 45:21

My sister's kind of tested this. The only thing I think she might have paid for these dresses from the fairytale shop is she had three girls and they kind of maybe were like a one of a kind you know, one in each size, and she made our clothing. If she put up one of her dresses to make a skirt for me or whatever it took, she was thrifty, she was smart thrifty and it made it look like. I mean like, did you ever wear the same thing to work, mom? How do you do this? Because she caught us, so I'm able to do that. She's got different gowns. I have to cut them, but things to cover her in bed, I still want to dress her. So I'm going out looking at this. We keep it on. Mom, get a little hat or whatever, because I can do that, because I don't have this other budget that I have to decide and figure out and put money aside for this than the other.

J Smiles : 46:24

Yeah, yeah, so got a little bit of that, but I'm telling you, bringing forward the personality, the lifestyle, the choices that your LO made when they could. That style, that presence, that the essence of them makes a difference. I believe. I believe so parented up community, you all know I said hey, I'm going to always tell my truth as best I can and let you know what has worked for me. And I'm 11 years in.

J Smiles : 47:07

Dr Donna Olivia is telling you about her mom, and this is seven years with hospice, and so there's two examples of honoring the LO's style, tenor and choices of life. You know that at least it did not work. Ok, I'm not going to say that it had to work, but look, zeddy just got her hair dyed. The one thing she told me my whole life is don't let my gray hair show, I don't care, I don't care what they say. You find somebody that dyed my hair. I don't get all of that. Gray hair looks beautiful and it's silver and it's wriggle. She said I don't want to be wriggle. I don't want to be wriggle, I want to be, I want to have black hair.

J Smiles : 48:05

And her mother had gorgeous, a gorgeous silver mane. It was, it was, it was, it was salt and pepper and it was black and streaked and then it went to just all silver and it was the talk of the town and my mama said hey, jg, I don't want that, Don't do it, don't do it. Do you hear me? I don't care, I will know, I will know, don't you let my hair so so.

J Smiles : 48:39

So I just got her hair dyed and I got her nails black, painted black, and the caregiver was sitting there just rubbing her hand to make her keep her feet in the water, because she kept wanting to take her feet out of the pedicure thing, because she's like oh, I, I, I, I, you know, because who, I don't know what is this the sensation? Or just having, if she didn't want to do it. So this caregiver sat there for an hour just rubbing her hand very slowly to just distract her, enough for mama to keep out, because she said I want red. Oh, my, my toes in my head. I don't, don't, don't want no new color. I don't know what the colors are going to be. And I, you know, just keep sticking me with red.

J Smiles : 49:30

And I that's too funny, Even when she sees other colors on my nails and say, oh, that's pretty. And then people have suggested, well, maybe you should get a different color. I was like hell. No, I'm not. I'm not, Not, it's not worth it. I'm getting red.

Donna Olivia: 49:51

Oh, my goodness, oh my goodness, oh my goodness, that's exciting.

J Smiles : 49:56

Have you had through this seven years? Was your mom ever able to have any outings? Her level of hospice? No hospice can have. You can have kind of different levels of physicality barely once she actually came.

Donna Olivia: 50:20

Now we had some visits prior to her living with me. She would go to the school with me. She would talk to anybody who would listen, because she's retired teacher as well Speak Spanish. They would love having conversations with. Most people who speak with mom just love engaging in conversation with.

Donna Olivia: 50:41

So we really did those outings, primarily before she actually came to live with me. We had maybe about a year of a few things. We get her in a wheelchair and she adjusted to that. That was not what she wanted but she realized she went from no cane to cane to roll later the wheelchair to being totally immobile. But we were able to do the Harriet Tubman Museum because she was a history teacher. She loved that at one point. So things like that.

Donna Olivia: 51:23

She loved going, she loved traveling, she was a social butterfly anyway. So these kinds of things I knew she liked. So come on, mom, we just pack up and go until we literally could, not as long as she was able to be herself, her normal self at any given time. That's when some of the challenges would happen, because when she became a tube fed, for example, I would imagine that wasn't so comfortable. So she pulled it out. She went.

Donna Olivia: 52:09

I heard the sound because I was sitting on the couch in the same room. I looked up, it sounded like a drip. I'm looking up, I'm like, okay, now, what is that sound? So I run to her bedside. I'm like, mom, are you all right? And she said here you go. I said huh, huh, what, what? I'm looking for the number to call the hospital, why I pulled it too much. And my point there is by then, of course, she wasn't going, and by the time they were working with all of that, she literally became immobile. We're proud to that. We did have some outings, but while she was still herself, she was making some decisions, and that too was not one she wanted. And she kindly handed it to me and I said somebody help me.

J Smiles : 53:08

How polite was that, though. Here you go, dr Donna Olivia. That was very polite and that was very laid like and dainty. She said. You said are you fine? She said, yeah, and here you go. Here you go, you can have this bag, you can have this bag. I don't need this. As a matter of fact, I have figured out. This is feeding me, I'm full, I'm full, and this is uncomfortable. Here you go. That's the same as saying take my plate, take my plate.

Donna Olivia: 53:40

You need it, I'm done. I didn't even think about that. Yes, it is, take what I'm done. She had to get to me. I said, oh my God, somebody Get this chicken bone Out my face.

J Smiles : 53:54

That's one of those moments.

Donna Olivia: 53:58

I'll tell you, you could only imagine. She said if you don't calm down, you're going to be on the stretcher, not your mom. I said, okay, I'm going to calm down. We called 911, tell them to come on. They didn't know what to do, but you got to calm down. I was beside myself, I was lost.

J Smiles : 54:27

When she took the tube out. Yes, I was done.

Donna Olivia: 54:30

I was so done. I was like what? I'm like, what am I supposed to do?

J Smiles : 54:39

Right, they're air getting in there. Are their germs getting in, like we don't know what that means? She was there with a hole in her stomach. It's a hole, there's a hole.

Donna Olivia: 54:49

It has a hole. How is that okay? It can't be okay. I mean, for us.

J Smiles : 54:52

It can't be okay. Right now, I don't know what's going to happen. A fly, worms, germs. I, right now, am going to have to go call 911 for me because I'm about to freak out and it's over. It's over. You're okay, your mom's okay. This is new to me, yeah.

Donna Olivia: 55:19

I was so done.

J Smiles : 55:20

Yeah, but they say that so often the caregiver having the bursts of adrenaline and the ups and downs that go, and they're waiting for that other shoe to drop, or both of both shoes do drop, yet no one is there to comfort us because we are freaking out about something that our LO experienced, and when we call 911 or the hospice facility, the hospital nurses, doctors, other family members, burst of all, which is one of my favorite reels from the Instagram. The little baby used to be instead of F and she was just so adorable, so I still use it burst of all. So, first of all, hopefully, all the people that we call on at least half of them show up to help us, but when they do that rightfully so all of the attention goes to our LO to solve the crisis, but no one really addresses our emotional depletion. And so then you are having this, this roller coaster ride, and at a point, our neurological systems, these pumps of cortisol or adrenaline or whatever, coming back and forth, and that is happening over years in the case for like you or for me, and you run the risk of heart disease, stroke, high blood pressure, all of these things. And so they tell you, if you don't calm down, you're going to be a stretcher. Before your mom, I got the same prognosis, diagnosis, all of these things. I mean it's a hot, hot, hot, hot mess. You man.

J Smiles : 57:35

There's so much more I wanted to talk about. I'm probably going to have to have you on again because I don't want to elongate this too much. We were supposed to be done already. This is so. Do you have a few more minutes? I do? Okay, great, okay, great. I'll go get it. Okay, all right, all right, y'all. This is about to be. I'm going to speed through the rest of this conversation. It's just been so juicy and so sweet. I love how you spoke of a little more time. I don't want to give it away. I want you to share how you couch that in the book. Would you decide to frame a little more time with your mom?

Donna Olivia: 58:23

So, as I watched certain characteristics fade, each time she would come up with something or stay, because she was still verbal at that time. Each time she would come up with something or share something or say something to me that I could really, really connect with, that told me that I had more time. She wasn't. She's still there. She's still there. And that's how I looked at it. She was. I didn't know how this would progress, how soon, how long, how short. So every time, anytime, I got that moment from her, whether she called my name or whether she said something.

Donna Olivia: 59:22

I remember the situation where she she had asked for her hat. She dozed off, so I moved the hat from her head and laid next to her bedside and when she woke up, she was like where's my hat? I'm like what? You remember that coming out of your sleep? She's yes, one for grace, zero for all. That's right. Yeah, yeah, yeah. A little more time, it's okay. Okay. So I was looking forward to another something happening. It might have been a little bit longer period of time in between, but I was looking forward to that and that, let me know I still had time. A little more time, little more time.

J Smiles : 1:00:12

I read a few of those pages and anecdotes more than once. My mom is verbal, but she does not say my name anymore. She doesn't say anybody's name. She does not affirmatively do proper nouns. She doesn't say book or house, I mean in order. You know she won't say a person's name or a city or a state or nothing. All right, she does. She can't call anything by its proper title.

J Smiles : 1:00:53

She knows I'm me and I can tell through this keen observation I get a different, there's a different twinkle in her eye On those moments. If I say, hey, mama, it's me. Sometimes she still will say I know it is me, girl, girl, girl, girl. When she says, and she does the, you know the mama look a little bit like she wanted to say I know, I know what you're trying to tell me and see, I'm an older child. So I just want to get the stories of people ask me why I only had one child and I asked them have they met you? As if I could have another one and she would go through the labor and how it almost took her out of here and all the things, because they should have done a C-section. But it was midway through when they realized they should have done one. So she had to go ahead and tough through that. And so she'll say with a scowl, like she want to do the suck teeth, girl. I know what. She'll just say I know it.

J Smiles : 1:02:31

But, honey, I feel like I am president of the universe in those moments, so that a little more time was such so poignant in the way you framed it, because you weren't Only talking about time on earth, you were talking about a very connected soul moment of clarity. Yes, and honey, you took my air when I was not Right, you know, at first I read it and I was, you know I, you know I was. I was being a little more juvenile and elementary, with the understanding of a little more time, like oh yeah, because I'm still alive. Now I was like, oh, she went deep on me. She didn't mean she's still alive. I said she better go ahead and be a PhD. That's what that extra schooling did. That's that extra schooling.

J Smiles : 1:03:41

And you have such wonderful Encouragement, hope and advice for those who may think they could never be a caregiver. They could never do. They may hear this episode, they may read your book, it may come across you. They may hear a parent up in Jason Miles and they're like man. Good for them. That's. My mom stays, ok, or maybe she ought to just drop dead in the car, because what I can't do, but you have A different take Never, say never.

Donna Olivia: 1:04:40

Never say never. Yes, I have other brothers and sisters. I even have a different take on them and and how they care. They help in the process from afar, and I think that's important to mention because otherwise I could have wondered who's coming to relieve me, and if I spent my energy there I wouldn't get. You know, the brothers who handle the business. I have to do that. Just tend to mom, my sisters who call and they don't know. Their calls just seem to come At the right time when I need to hear from them and when, when they say, how are you doing? Oh, not the universe, but at least of the United States, I'm president right there. Yeah, yeah, you know, then the so.

Donna Olivia: 1:05:35

So the boys are fatherly in that they're going to make sure I need and want not one thing. So I have to be careful about what I asked for. And then the girls are attentive to the, the spiritual, the touchy, feely side of me and the concern well, how are you doing? Are you feeling good today? Have you been getting your rest? That kind of thing. So I think I have a wonderful package and not one of them have come to do a two week rotation or anything, but they are there in other ways that are so important to the journey and I've had to embrace that. I've accepted it and it has made me definitely a happier caregiver, because I'm not upset about the fact that it's me. I probably knew it would be me, more than likely. Yeah, so I'm not upset, but the fact that they chime in in those ways I wouldn't. I don't think I traded for anything.

J Smiles : 1:06:32

Yeah, Strength comes when the unexpected happens. I didn't know I could do it either. The number of times I can't count the number of times my best friend or a stranger has asked me Jay, how did you get it? How did you do it? Or, oh, my goodness, it's been more than a decade, how are you continuing to do it? I said, hell, I don't know. I mean, I know it's through the Holy Spirit's grace, okay, but you know, they are really kind of expecting some tutorial on.

J Smiles : 1:07:25

Well, I had this plan, step one, step one, as if it was, you know, similar to going to school, you know, whether it's elementary school, high school, college, whatever, or taking a cooking class or following a cooking recipe. Go to grocery store, you get your onions, you get your oil, you get your eggs, whatever it's like. No, I didn't, I don't know. Step two you get. No, you are. You're madly in love with a person who, well, for me, I was madly in love with a person who could not do anything for themselves. Those are the two facts, and it was all right, ready set go.

Donna Olivia: 1:08:25

Oh, that's exactly right. And to take it even a step further, and you also realize that they did it for you because there was a time we could not do this for ourselves, so the person would now reverse the rules. That's it, yeah.

J Smiles : 1:08:44

Girl hauntie, let me tell you something. Way past whatever, 10, 12, I don't know how long you can't do nothing for yourself. My mama was still doing things for me. In that my mother was my. You know, people say my mama was my best friend. She was not my best friend. Okay, I didn't talk to her. My mama was my mama and my best friend was my best friend.

J Smiles : 1:09:16

Now, my mother was my biggest cheerleader and my mother was my first sounding board of any major decision. She had a magical mind, that of of balance, yeah, and she was like I'm pro and cons something real fast about a man. Now, I wasn't about to get into whether or not we were having sex to my mother, I'm still a virgin, okay, she went into Alzheimer's not knowing whether or not I had sex and we're going to keep it that way. She's going to stay, die and I'm a state of virgin JG. You know, everything is fine, but those were. But it didn't matter if I was trying to decide in my machine I was in this semester or should I take 17? And she will say, okay, what else are you going to be doing? And I mean she never just hit it from the. You need to hurry up and graduate. It was what are your other. So she was my best life coach. I guess that would be today's terminology. Yes, yes, and you know they're just. You can't replace that, coming also from the person who you know loves you most, like the movie John Q. I'm not sure if you're familiar with that, but that was, I'm getting it right. That's when Denzel Washington had the son who needed the transplant. Yes, and he took over the. He took the hospital hostage because he was one of them to kill him. He was going to take his own life, so they would give his son his, his kidney or something liver.

J Smiles : 1:11:18

And I was not living out. I was an adult and somewhere. I don't know if I was in in grad school or at work In corporate America but my mother left a message for me in tears saying I know you're busy because I would, dr Dio, when I, when I would focus in, I don't do anything for fun. So whenever that movie came out, I, my mom, knew I wasn't doing anything social or for fun, so I probably was in grad school or whatever it was she and she called me and she said I know you haven't seen the movie. You need to go see it, because that's me right now.

J Smiles : 1:12:11

She said I walked out of there. She said my parents went to the movie together and my daddy. She said I, she said I would. I cried a little bit, but I more walked out of there shaking my head Like that's damn right. That's what you do, and even as an adult, that's the type of continuous affirmation she would give for no reason. She just left this message on my voicemail or answering tape, whatever I had at the time to say go see the movie. I don't want to say anything, but mama is Denzel and that's what I would do right now. Love you, bye. And so when you ask me, where do I get the strength? Like I can't what.

Donna Olivia: 1:13:15

That's not what you're asking, not wanting to be answered in that way.

J Smiles : 1:13:19

Yeah, I mean, I don't. This is the thing. I don't put in effort to find the strength. It's just there, it's just. It's just. I do get tired, I do get tired, I get physically tired. But I was born to be her daughter, and whatever journey she's on, apparently, so am I.

Donna Olivia: 1:13:50

Right there with her.

J Smiles : 1:13:52

Yeah, I have enjoyed this conversation so much, dr Donna Olivia.

Donna Olivia: 1:13:59

I have as well.

J Smiles : 1:14:03

Where can we connect with you, the parenting up community? Where can they connect with you? Where can they find the book and anything else that you have coming up?

Donna Olivia: 1:14:17

What can be purchased on Amazon and at Zulan. For us that's X U L O N and other major book sellers Barnes and Nobles, they may. The audience can reach me through caregivers corner on Facebook and I'd like to leave my email address if possible. It's Donna. Deal in an a may and a why MA Y E at Gmailcom.

J Smiles : 1:14:52

Donna may make fantastic, and caregivers corner is there on Facebook. They're an S on corner, or no? Yes? Well, there you have it Parenting up community. No matter where you are in the world, you can get this sweet read. You can contact her on Facebook and you can email her. Yes, so I have a couple of questions about hospice sales how you figure out how to get sales from all your supplies with hospice and equipment so that that that alone is worth the email and a message on on Facebook. I tell you that I'm about to message you right now. Even though I know how to get you otherwise, I still think I should just tell my team center Make sure, make sure we getting all the wipes we're supposed to get, okay.

Donna Olivia: 1:16:09

I'm telling you better ask. Yes, they've been wonderful.

J Smiles : 1:16:15

I appreciate this so much. I appreciate you taking your time, you sharing your story. We are connected. Caregivers across the world, family caregivers across the world. We are connected. Alzheimer's is heavy, but we ain't gotta be, we ain't got. What we have is each other. Yes, and while and while and until there is a Solution or a cure for this dreadful disease, we will keep each other above water. Yes, okay, okay, thank you so much, of course, until next time, bye, bye, snuggle ups.

J Smiles : 1:17:05

Number one she told us and let us really understand that hospice isn't a bad thing. So many times we believe as soon as you bring in hospice, your LO is gonna like die that night. Her mom has been in hospice for years and it has actually made her life better as a caregiver. So it might not be for everybody, but it is a resource. Your medical insurance has allowed you to be able to use hospice. It is going to allow your LO to have a higher quality of life and take some stress off of you. You can get extra supplies, you can get an extra pair of hands and you can have somebody that is way more qualified than you are. Don't let that hospice stuff go.

J Smiles : 1:18:03

Number two Incorporate the arts, all right. So now Donna Olivia, dr Donna Olivia, she is really a professional dancer. All of us can do all that stuff, but incorporating the arts in some way, whether it is just singing and dancing with your LO Maybe your LO is in a wheelchair or in the bed, but you can sing and grab their hands and do it like a fake two step and it will make a difference. It will make them smile. Now you at least move in their arms and their elbows and get some blood circulating. If they can walk and stand up, do a funky two step. If you start bending down, they're going to start bending down. You don't have to know what the latest dance is. You don't have to be an instructor who the hell cares? The point is whether you are coloring or painting or using some kind of clay or modules or something, do something fun that involves music or art. Why not? It damn showcase hurt and it doesn't cost a lot of money.

J Smiles : 1:19:16

Number three never say never. You don't know what you are capable of. Oh, I never be able to take care of my LO. I'm not good at wiping people's butt. Okay, listen. I spent all of my adult life trying not to get pregnant because I didn't want to have a baby and I got a big old mama baby.

J Smiles : 1:19:44

You have no idea what the Holy Spirit if you're not really a believer. You have no idea what you can just rise to in your own body and mind and what you'll be able to accomplish. Maybe you'll be able to help a caregiver that you're close to get through some hard part of their life. Maybe you'll be able to become a phenomenal caregiver. Life amazing with the human spirit and ingenuity can create when your back is against the wall. So don't stress out too much. If you're new to this or you're just thinking I might maybe have to be a caregiver or a supporter caregiver, you can probably do it. You can probably do it. Just chill, just chill.

J Smiles : 1:20:38

Today's sponsor is the outside been open tour. Get your ticket at jaysmousecomedycom DC. New York City, chicago, houston, atlanta. Get your ticket. Come on, we made it. Thank you for listening. Please share with someone you love. Subscribe for continuous caregiving tips, tricks, trends and truth. And pretty pretty please, with Brain Health Sweden on top Review on Apple Podcast. Subscribe to our YouTube page and follow us on social media too. I'm a comedian. Alzheimer's is heavy, but we ain't gotta be.