PART 1: A conversation with Dr. Sandy: The Neurosurgeon & Caregiver

First thing I want to get into Dr. Sandy is that Friday night, when I called you you had no idea I was in LA, you didn't have any idea that my mom was even having any issues. I remember you were at a party or something. And I text or call and you said something to the effect of Hey, how's it going, Kenny? Wait, and I said some of the text of like, not No, but hell no.

Yes, I remember that. I remember.

And you were kind enough to step out. Yes, yes. And I talked to you and I cannot tell you how comforting it was to have you. It is better to be able to call a lifelong friend than to Google it.

Absolutely. I totally agree. You know, I had not totally forgotten about it because when I heard it on your first few podcasts as a wow, there's nothing wrong with her memory. And I remember vividly standing in the in the garage. It was a it was a birthday party for one of my husband's friends daughters. That was there as an accessory. Okay, speak. I remember saying I'm at a party and usually folks will say okay, we'll just call me back is not an emergency. I did not get that from you. So I knew I needed to step outside and try to get a handle on what was going on.

Parenting of caregiving adventures with comedian J Smiles is the intense journey of unexpectedly being fully responsible for the well being of my mom. for almost a decade. I've been chipping away at the unknown, advocating for her and pushing Alzheimer's awareness on anyone in anything with a heartbeat. caregiver newbies, oh geez. Village members trying to just prop up a caregiver, you are in the right place.

This is Zetty. I hope you enjoy my daughter's podcast. Is that okay?

Today's episode, Dr. Sandy, the neurosurgeon caregiver, part one. Hey, parenting up family. The Dr. Sandy episode was delayed by several days. Why? Because Betty, my mama the reason why I'm a caregiver was hospitalized. Y'all she tested positive for covid threw me for a loop. back. Let's go. Man, I cannot believe this. Like how in the world does it happen that one of your closest childhood friends is up this happening? To have all the talent that you need in the middle of a crisis. I'm talking about the one and only as I like to call her Dr. Sandy. Hey, Dr. Sandy. Hey, Jay. Oh, you're here on the podcast.

Thank you for having me. This is amazing. I'm excited to be a part of this.

I am excited to my affinity for you is obvious through the first several episodes. Yep. Over the top that everybody gets to hear directly from you. Okay, back to that Friday night. Yeah, I was in a full panic. I was so unaware that what mom was going through was neurological that I hadn't even called you like I have your cell phone. I could have said, you know, technically weeks or months in advance. I could have said hey, Dr. Sandy, I think something's wrong. But just to let everyone know just how much I was unaware of what her symptoms suggested. I hadn't even called you. But here I am at sea decide that they suggest brain surgery. And after I pick my face up off the floor.

Then I call you exactly. I was surprised. Because the last time I think I saw you was was at your father's services. Yeah, you know, everyone looked understandably devastated. But I said, Well, how did you get to LA? What what what happened? I remember Oh, hearing your first few podcasts. I totally get it. Now. I totally get what happened and how you ended up where you were and and how you were on that ledge and needed to be talked back who we are, what, 910 years later? Yes. But yes, I totally remember that

That was one of those times where thank God we have ell phones. Yes. And there's ignals working garages. Oka . Definitely. Yeah, because I ca remember one part of the conve sation where because we'v been, you know, friends for o long, we can talk and we can j ke even though it was a very s rious conversation at hand. And you say something to the effec and I paraphrase girl got to o away out to LA to have an MRI one. And I was like Chow, I didn t know what they were going t do. I just had to get a bunch f tests done. And these were t e first people that were willing to do a whole set of tests. An you said, Well, I could run no Test right in Atlanta. I s id Chad, I didn't even know wh t I needed rod just to show you ow clueless I was. And I'm a fa rly informed individual. o to let people understand t at's a part of my reason for t is podcast at all. simers is su h an A mysterious disease that we often don't know what the sym toms look like to know that yo need to call a neurosurgeon or neurologist. I remember you said, What, they are certainl moving to surgery fast. And th n you asked me, Why are they say ng surgery so fast? And I said, ell, they said, they are com aring the MRI from five years a o to this one. And you said, Ah your version? Like, I don' know if you guys do that. But when you're thinking you do that, oh, I do when somethi g has clicked with till you go. Oh,

and I was just about it. Okay, yeah, that Yeah, so yeah, you know, I know of Keith black. He's well respected in our community, for sure. But I still needed a reason. We just needed a reason why? Because we were family, you know? And yes, so definitely, but you gave me a good reason you had it together enough to convey that to me. And so I said, Well, yes. Go ahead and have it done. I was reasonable, right?

Because I could compare one MRI to another

And the symptoms, the progression of symptoms,

right? Because I was like, could you fly? Okay. Do you think I could get mama home for you? Because when you told me, Well, you know, I could do that surgery. I was like, well, but then when I described the symptoms to you, you said j, she doesn't need the flag. No, you need to get that done there. And that was just because I didn't have anybody else to call that to Sandy. You know what I'm saying? Because of the the series of events that had happened in my personal life. I didn't have anyone else to call. First of all, I was a Friday night. All right, and just as luck would have it, thank goodness, this was what my mama got, like, okay, not that I want her to have a brain problem. But I'm gonna just say, like, if she had had a problem of the elbow that could kill you. I don't have no specials on elbow. I don't know what to say. When I was thinking about I was like, what, what? Thank you for letting her have something where I got a friend, that's a specialist in that thing.

Yes. Why did he do it?

Well, he will. You were calm. And you were very reasonable and rational through the questions you gave me. And then you said, Jay, you gotta let them do it.

One of the things that you know you did was you closed ranks. And that's what we all do as humans, when someone we love someone we know is very prideful. We close ranks. And so sometimes that blocks all reason I'm guilty of that, as well. As you know, my mother has advanced Alzheimer's as well. I've closed ranks on her, I lose it from time to time. I have a medical background, but I tell myself, I was her daughter way before I was a doctor.

Okay, pause. All right on the podcast when you hit something that good. We are going to have a cheer. You were definitely her daughter.

Yes. Wait for your daughter. I know that we and we're getting ahead of ourselves. But when my mother and take your time, honey, get into the what I like to call interactions. Sometimes Sandy, the daughter has to walk out the room a few minutes, and Dr. Sandy has to come back. And thankfully with this disease, she's forgotten about it. She has totally forgotten she's in a whole nother space. I remember but yet I have calmed down and allowed myself to be the reasonable person in the room. The doctor is a reasonable person, the doctors reasonable person, the doctor is not reasonable at all right? We know we're not reasonable. We fought when we were normal mother and daughter, and, you know, we continue to fight to this day. Just depends on what the situation is.

Absolutely. And I would also like everyone who listened to to know that as human beings go, I think most of us who've known you for a while we've put even your non doctor person in a fairly reasonable category. You're not known to be the loose cannon. You've never been a loose cannon in the group. I'm not saying you can't get pushed to the edge. Right. And I do believe that Dr. Sandy is more reasonable than non doctors. Yes. But I just want everybody to know that you ain't never cardi B.

No, I try not to be.

So I can only imagine what that takes you through with your mom.

Yes, it's emotional.

You gave me a nice segue into that. So I want to go ahead and talk about that. You are a mother.

Yes.

How old are you kids?

My son is 14 and my daughter is 11.

And your mom has advanced Alzheimer's. And when you say advanced, like what stage is that medically or what are her symptoms?

A lot of people will call me with neurology specialty questions. So I'm speaking more as her daughter and someone who has a neuroscience background right rather than an expert neurologists in the field.

Great. So that's what we like here is the soft touches podcast.

So for me Advanced Alzheimer's, I use it in a span of time. Okay, how long does it take her to forget something? Gotcha. And for her, it's like two minutes. I think that happened two minutes ago, unless it's a really, really emotional situation where she is fallen and she's upset and just very anxious. Somewhere around two minutes. She forgets whatever happened prior to she will not get up and go to the bathroom automatically anymore. Okay, but if taken to the bathroom, it's almost like potty training. So don't tell it. Nobody knows what to do. She is still able to feed herself. I help her get dressed.

Does she know if she soiled herself? No. Yep, that my mom either. Now, my mother no longer has the urge. And she doesn't know when it's happened to say, hey, I need to get cleaned up. Yeah. Okay.

So luckily, she'll hold it. Like, we just have her on a regular schedule for hours, we're going to the bathroom to some time, sometimes she'll get up and realize that she's gone, and I walk in the room and she's taken her clothes off. And, you know, in an attempt to rectify the situation, okay, but it's not so advanced to where she doesn't know how to swallow or doesn't know how to you know, do her body has not forgotten what to do in certain situations. So that's my definition of advanced Alzheimer's. Definitely couldn't take care of gotcha. Does she know you? So? No, okay. And once upon a time, she did, okay. But they're about every other week, when I come home from work. I walk in the kitchen, I'm talking to somebody, she'll say, Sandy, and all my heart just jumps to three times its size. You know, you had asked me what is rewarding in this and Ryan, those brief moments of her knowing who I am.

It just warms my heart. I want to take a moment to underscore that for anyone who is new to caregiving, or for anyone who is supporting a caregiver, because this podcast, while we're talking about everything dementia related Alzheimer's, primarily in about caregivers is also for those who are supporting caregivers, because without those people supporting us, we can't make it either. But I just want to underscore the fact that as trained as you are, it breaks your heart when your mom doesn't know who you are. So I just need people to understand there's any emotional and psychological component that is attached yes to being the caregiver for your loved one that defies logic and reason, and we cannot help it.

It does get easy. That's the hardest part. When you're first dealing with this condition. The hardest part is accepting and just understanding what's going on you reasoning it out, because it is very emotional. You see this person that was so prideful, just did amazing things in life slowly lose that. And so you know, it sucks.

Your mom's tough. She was and she was real witty, sarcastic. It was hilarious. I doubt she was

My mother was was blind from birth. So things happen in my house. That wouldn't happen in the regular household in my government. Right? That's right. And we tend to forget that she was blind, not deaf. You couldn't get away with everything. Everything in our small house. She heard everything. So when you know when y'all would leave? I said, Well, Mama, don't tell. She said, Well, if someone tells mom call me I won't volunteer information. That's right. That's okay.

That's right.

So if your mother was asked, What did Janay do something she don't tell? She did. But it went

it was what you go to.

Yeah, she but she won't go and volunteer in it. And that is all you can ask.

And then you're my maternal grandmother. My mom's mom Zetty, the person who has Alzheimer's. My maternal grandmother taught your mom. Yes. Physical Education in dance. Yes. at Alabama State University. It had to be something to see. If they'd had cellphones

Yeah. She She would still do her water aerobics and all that stuff. And when she was still in Montgomery, and I was in college, she would go regularly to her water aerobics. So I guess that's not too hard to believe. No,

No, I mean, cuz I know this. I know my grandmother. She was never known to just give out grades. So so your mom would do something. I'm saying that she did. I mean, she did it. Somebody remembered something. And she I remember to she was telling us about how she knew Clarence Carter. Oh, yeah, they were good friends. And so listen, Clarence Carter Claire's God. Yes. So I would just tell you that doing Clarence cod and glorious physical education classes they tell you what it was exciting.

I can only imagine I can't.They were really good friends.

Yes, it looks like anyone who doesn't know that is please Google that man. He is a legend. Oh, musical. I'll be stroking that's what I've been doing patches.

Absolutely.

So that's good times had in Montgomery and he spread that love around the entire world. Thank you for sharing Part of around how it does get it does get easier. But just to acknowledge that just because your mind knows something doesn't mean your heart follows along exit, right when you're noticing that your loved one is suffering from this disease and you see them losing their mental capacity in front of you, and it's just it's just tough to watch. It's tough to witness. And you are squarely a flag holding ambassador of what is titled the sandwich generation. Mm hmm. I don't know if I know anybody more sandwich G. Buda Bologna, in the middle with the two white bread, you got the two kids tomato, lettuce, and mom, and your mom has Alzheimer's now for anyone listen to sandwich generation is the term that marketing has decided is mostly it is our generation Generation X where we are caring for children, and a parent or some elderly person may be a grandparent. Yes, talk about that.

So the reason we find ourselves in this place is that people are living longer, you know, there's nothing to have a 95 year old come to the emergency room because he failed. Well, of course, don't fall, you know, what was he doing when I mean, but that's just you know, in the back of our minds, that's in the caregiving was, you know, but taking care of my mother, I can see her balance problems and things. And so I get it now, but for living longer, and so their Social Security is running out there, whatever is running out. So there's not an option of these expensive caregiving places assisted livings and full living places. So we all find ourselves in this in this situation more and more. It's tough to be here. But you can't be too proud to ask for help. So I have someone who comes in during the day when I'm at work, and the kids are at school, and then I have another lady come in at night to make sure you know dinner's warmed up and on the table and to at least get my mama taken care of. I've had to ask for help, which is something that you know, you describe in your first few podcasts, something that we're not used to doing correct. So, but I have great help. And I have helped that's been with me for many, many years. Trying to be present for everyone involved gets tough. being present for your kids being present for your husband being present for your mother. And then at work. Oh, yeah. Forgot I do work.

Your surgeon.

Yes, fully present and cut on people's head on call. Yes. It's definitely a plate spinning situation. I have, you know, just through faith, and thankfully, a steady mind. I've been able to manage a husband is supportive, because his grandmother lived with them for a period of time. Okay. So hopefully, that's something I'm teaching my son to be tolerant of that and my daughter, you know, but I told me, I do not want to put this on you. So I'm working to get my long term insurance care needs together. So I got, I got you. I told you just come get me for the holidays. Okay. You know, just check on me twice a week and make a lot of noise and people don't treat me. That's right. But that's right. So that's where I am. It's just a day by day situation.

Okay, you've gotten to the point, we don't think about it when you first got into the sandwich when you were a new sandwich. Mm hmm. Have you never thought about it? Or was it when you were new sandwich did it? Did you grapple with it? Or did you kind of jump right into Hey, I just got to get some help and keep pushing.

I didn't have the suddenness of everything. Okay, so mine was definitely a gradual onset. Gotcha. And it started with I was thinking about we were in Miami for a family reunion. You know, we rented a car was about six African Americans in a call in July in Miami. And the event happened to be overheated. Okay, and she was cold and she wants a off. She didn't want no air blowing on nothing. And so the first sign of her kind of being not really reasonable was that, Mama, we can't turn that condition off. We can turn down we shut the vent and give him a jacket. But we we can't and right og got it wrong by North Miami Beach all the way to South Beach to where we were staying at this very same thing. But I didn't know then, because she still had compensation measures. Actually, she came to stay with us for good when William was born, okay. I just went from carrying what for one baby. When he got independent, she became slowly more and more dependent. I gotcha. So it was a gradual onset, but I knew I needed help. If something just tells you that she needs company, I needed someone else. Actually, I wanted someone to take her to exercise and to take her to be to the senior center. So that was the original reason I hired someone for her company to keep her company keep her active to get her hair done or nails done and things like that and slowly just slowly evolved for all of us into this situation

That is more palatable. It is to your psyche. It's just companionship, girlfriend, we just go hang out who don't want a girlfriend. I mean you might go over so I can understand that. And a little bit earlier you talked about even accepting what is happening right and how hard that can be. I talk extensively about denial how hard that was for me. One is the way I'm wired and then to how abrupt it was with my mom's downfall into dementia. But I was likely a bit delusional with my denial. That was an episode seven when I talk about denial, but it was just such a strong thing to even get a grapple on. This is real. Yes. And this time is happening. It is not about to unhappen

No time soon

There is no unhappen no, I mean, the only unhappen literally is when one of us isn't here. Like the unhappen the only time J Smiles is going to not be a caregiver is either J Smiles is with Jesus. Was that he is it took a minute Yes, for my brain and my heart to come to that connection. It seems that you're planning in your generation effect scooted you into we're just going to keep caring for people potentially was that helpful? And maybe you didn't future a lot.

It was helpful. I mean, like I said, right now we're, we're essentially potty training. No, so I had a hand alone. Okay, we're just gonna sit here till you go. So we don't have to worry about it later on tonight. And the tantrums I have had it somewhat easier than most by just thinking of it like that. Okay. This is my new child when people ask me how the kids? All three of them good good. Like you said the only time I'm not a caregiver is when we get away on vacation right or I get a chance to get out of town even that requires a lot of planning right and are you still on call. I'm still that's the other reason why I leave town because you can call me but I can't do nothing for you can't get there you can partner

Or hold on until Monday. it's a different life but I think those of us who have children or even have pets right understand how to take care of another person or individual something that's a lot something that's alive with a heartbeat and blood Yes, yes. It's that long goodbye because she was my advisor she was my friend. Yeah, Ill and so I don't have any of that anymore. I have a shell you know, I find myself just when I put her into bed at night I said you know what we're gonna be alright. Yes, I got you know we had a good day today. That's fantastic. It makes you a better person to meet Tell me more about that what what when you say that what do you mean I know for a fact that I am more patient right then I would have ever ever been more tolerant anytime we have our clashes it doesn't take me as long to calm down and okay get back to normal thinking of things from another person's perspective. We need to do that as humans anyway. We need to back up and somebody comes at you wrong. I forgot where they coming from. Yeah, right and and she's coming from a place that who knows somebody is always trying to kill always really. Okay. The paranoia. Okay. As a nobody in here. She's like, Listen, you don't see you don't see him. Hear that man over there.

Listen, you don't see you have never been able to see what she's seen

What she sees what she hears. I can't hear what she she she's got her hearing is still there all the way. Yeah, you never could. That's why we could get in trouble, talking about the man in the door talking.

Right in his house to your wall. Yes. Right. Which I would like Ryan, everyone listening to that your mother was born blind. So I just for just for a moment of levity artistic expression for J Smiles. The fact that she's telling you you don't see him is hilarious.

Yes, because he had no

You can't never see what she sees. The snuggle up I want to introduce you to a concept called modeling. It's using your own mind to Google. Google your own brain. That's how I came up with calling Dr. Sandy. You will be surprised how many people you know that are one or two contacts away from the information you need. Moogle people who go Google uncle another snuggle up. A lot of caregiving is about mentally tricking yourself. Think about following Dr. Sandy's lead. Consider your loved one as you would a young child that way you may not get as frustrated or as impatient with them. They're your new kid you're parenting up. Another snuggle up Alzheimer's cannot unhappen there's no cure. We got to raise awareness and funds research is how we get to a cure. I'm working with the Alzheimer's Association to help get money you want to donate even $5 there will be a link in the show notes. Also, you can go to my website www dot J Smiles comedy.com single letter J Smiles Comedy calm that's it For now, thank you for listening. Please subscribe for continuous caregiving tips, tricks, trends and truth. Pretty Pretty plea e with sugar on top share a d review it too. I'm a comedi n Alzheimer's is heavy but we ai 't go