Pivoting on Pins and Needles - the life of caregiver Erika Watson

Erika: 0:00

Yet I'm still living Ne York, I called my aunt's house n Mother's, Mother's Day and alk to the whole family like I ormally would. And my aunt omes to the phone and she gives e this syrupy sweet- Hi, weetie pie how are yo

J Smiles: 0:13

Now is this an aunt that you're that you talk to often?

Erika: 0:14

Listen Don't worry

J Smiles: 0:16

Is this an aunt you talk to often?

Erika: 0:18

Often.

J Smiles: 0:20

So this is somebody you really

Erika: 0:21

New York with my mom. So this is something close to that you talk to often gotcha. Often That's correct. So she's like don't want you to worry, don't get upset,

J Smiles: 0:32

which is when you, that'swhen you immediately start worrying, right? I doint know why people do that

Erika: 0:37

Getting upset... It's like no matter how syrupy sweet the tone is that

J Smiles: 0:39

Don't worry you put in your voice when you say those things When you say don't worry, my worry is on ten

Erika: 0:49

That's right. That's exactly right. It's the equivalent of somebody texting you we need to talk. That's right.

J Smiles: 0:58

Exactly

Erika: 0:58

um, don't worry there's nothing for you to do, we can't find my mom.

J Smiles: 1:11

WHAT?

Erika: 1:12

You said don't worry. What do you mean cannot find her? I am confused. I am. Please explain it as though I am a kindergartener. I don't understand what's the word coming out of your mouth.

J Smiles: 1:23

And what do you mean? It's nothing I can't do. First of all, I'm about to call the Oh h one old Sheriff's Department. I about to do something.

Erika: 1:34

Listen, listen ummm

J Smiles: 1:36

Jesus

Erika: 1:37

Tt was a mess. We don't know where your mom is. She never shown up at my aunt's house after church.

J Smiles: 1:46

Parenting Up- 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 and anything with a heartbeat. Spolier Alert- I started comedy because this stuff is so heavy, be ready for the jokes.Caregiver newbies. OGs, village members trying to just prop up a caregiver, you are in the right place.

Zetty: 2:18

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

J Smiles: 2:29

Today's episode, pivoting on pins and needles. I cannot believe it the one and only Erica Lynn Watson is joining us at the Parenting Up podcast family. What's up, Erica?

Erika: 2:53

Hey, hey, how are you?

J Smiles: 2:55

I'm fantastic. How are you doing?

Erika: 2:58

I am wonderful, blessed and highly favored, ain't that what the folks say?

J Smiles: 3:02

That is what the folks say, thank you for taking time. Let's just jump right into this. You are a part of what they call the sandwich generation. That term really got created for us for people in Generation X because we have parents that we are caring for and we have children that we are caring for. You are one of those. Your mom has. What?

Erika: 3:33

To take a breath as you said it. Alright, keep going.

J Smiles: 3:36

I know that's right, that seems to resonate with you.

Erika: 3:41

Girl I mean, if somebody would like to come back and tap out I would say amen. But yeah, that is me.

J Smiles: 3:48

That is you.

Erika: 3:49

The salami in the middle of the sandwich.

J Smiles: 3:52

I know thats right. Your mom has Alzheimer's, correct?

Erika: 3:56

Yes, ma'am. She does. She was diagnosed in September of 2016.

J Smiles: 4:02

Okay, and you have a young son. He's not quite two years old. Is that right?

Erika: 4:08

He's two and a half.

J Smiles: 4:10

Oh, he's two and a half!

Erika: 4:11

He's two and a half , he turned 2 in April. And two and a half going on? 12 I'm convinced but yeah.

J Smiles: 4:19

Hahaha, I love it. Okay, so I'm getting ahead of myself a little bit. I want to back up so that so that everyone understands, I met Erica, at the mecca at Howard University. Hold on, let me find my cheers. Y'all know, y'all know I'm about to find some cheers. Hold on. Yes, yes, Howard.

Erika: 4:46

Yes, ma'am, yeas ma'am

J Smiles: 4:48

They said never mess it around and let me have these buttons. We are both Delta's, I'm her Dean

Erika: 4:54

Indeed

J Smiles: 4:55

Which means that if she gets out of line on here, I get to do some things no im teasing. Anyways, I'm not, she's not in the room, so I can't really get to her.

Erika: 5:05

So that's the biggest sisteries of them all.

J Smiles: 5:08

Yay. Yay. Thank you. So I remember you a little bit starting to tell me. Hey, you like Jay, I think something's not quite right with my mom because Zetty was diagnosed a handful of years before your mom, what was it that let you know something's a little funky going on with my mom? What made you know something was happening with your mother?

Erika: 5:36

Yeah. So a couple of things. There were two major incidents that made me say, Okay, we have to take this seriously. This is not just growing old gracefully or a casual slip of the memory can be improved by less coffee and more gingko biloba The first,

J Smiles: 5:57

Excuse me, did you say by less coffee and more gingko biloba? First of all, I don't ever want them to say that the memory can be improved by less coffee, because that would make me cry. Go right ahead.

Erika: 6:14

Well you know caffeine is not great for the Alzheimers situation. But so the fit the first thing happened was I was living in New York living in Brooklyn at the time, and I was having some surgery, so minor surgery. My mom and my aunt were coming to kind of take care of me because I was going to be down for a handful of weeks and my cousin and her friend also came because they thought Oh, this will be a fun time to hang out in New York City. And then we'll pretend like you know, we give a damn about our cousin too.

J Smiles: 6:53

Where did, where did your mother live? Where were they coming from?

Erika: 6:57

Everybody was coming from Cincinnati.

J Smiles: 6:59

Okay

Erika: 7:00

Which is where I'm from my hometown, where I'm born and raised in O H I O.

J Smiles: 7:04

Uh Oh don't start that

Erika: 7:06

Listen, listen, I had to you served it up for me, it would be wrong of me to not go and take a swing at that. They came up to New York from Ohio to kind of help nursing back to health after, you know, a surgical procedure that I've had. My mom and my aunt were staying with me. My cousins, they'd gotten a hotel room, but they would go out and do things while you know I was at home. So my mom and my aunt would kind of take turns like going out to enjoy New York and/or staying with me to play like caregiver for me. On about day three or four, my mom was out with the cousins and it was just me and my aunt at the apartment. And my aunt said to me She's like, Hey, have you noticed like that your mom seems to be a little disoriented, little forgetful. And she's like the girl meaning my cousins have mentioned it to me like we went out to dinner, we all went out one evening and your mom just was real kind of flustered by the menu. She was overwhelmed by the choices. She was very disoriented, like what she was supposed to be doing. And you know, it just was very odd. Because my mom is a very well traveled well heeled cultured woman. She's a retired elementary school principal from Cincinnati Public Schools. She's done all the things when you know when you look up and a holding it down, overachieving strong black woman, like there's a picture of my mom's face like kind of waving back at you. For her to be like, flustered at a nice restaurant because of an extensive menu is unusual, very odd.

J Smiles: 8:49

I want to pause right there because your mom raised you as a single parent too, correct?

Erika: 8:56

That's right, she did.

J Smiles: 8:57

I'm saying she held it down while raising you sending you to some well heeled places in terms of school, having you in extracurricular activities, and your mom was very involved in the community as well as her career.

Erika: 9:13

That is correct.

J Smiles: 9:14

And she she was a foodie, a bit of a foodie, wasn't she, well isn't she?

Erika: 9:18

Yes ma'am, yeah.

J Smiles: 9:19

So typically

Erika: 9:20

Getting more but yes, typically her normal self is very much like an Epicurean and very much a world traveler and very much a cultured person very well read.

J Smiles: 9:32

Right so so an extensive menu in New York would be something she would devour and welcome typically

Erika: 9:41

Under normal circumstaces

J Smiles: 9:42

Versus being flustered, right gotcha. She's not part of that Ohio says oh no that's too fancy.

Erika: 9:51

No, that's not my mom at all although, funny, funny story way, way, way, way back in the day. I the First time I brought a boyfriend home from DC from school, he came home for Thanksgiving holiday weekend, and we were getting ready to go out to dinner in Cincinnati. And my mom was trying to extol the virtues of one particular restaurant in town. And she said to this guy, like Oh yeah, this restaurant has the best seafood in the world there. I mean, this is just so fresh and their, their shellfish, their mullosks all just so fresh. It's just the best in the world. The guy had to he because, you know, this is who he is. He's a little bit of a jerk, which I learned that later in the course the the relationship, but at that moment, he said, He's like, you are in Ohio, we are virtually landlocked, they the Ohio River, and you want me to believe that this particular restaurant has the best seafood in the world, like that's a stretch. But all of that said her point was, listen, don't play me short. I know good quality dining experiences when I see them. And this particular restaurant that we're going to tonight offers exactly that. Like, no, my mom was not at all out of her depth by being at a fancy restaurant in Manhattan on a Thursday night, you know, with, you know, the young cousins or whatever. So it was unusual, because I think, why my aunt raised to me like, hey, this thing happened and your cousin's reported back to me and it was just odd. So just, you know, talk to her, ask her, you know, how she's feeling what she's doing. And then fast forward on that same trip where she was kind of helping to take care of me nursing back from postop, she looked at me with this real confused look on her face one day, and was just saying to me, like, you don't feel good, right? And I was like, Yeah, I was thinking, like, she's asking me how I'm feeling. So I say I feel okay, I feel better today than I did the day before. I feel like I'm healing up. She was like, but something was wrong with you. You had like, something's wrong, right? And I said, Oh, I was like, yeah, I mean, I had surgery. Again, I'm perplexed, like, girl stop you know I had surgery. I'm up here like, yes, like, what are we talking about? And she goes, Okay, she was like, you had a surgery and that's why I'm here. Is that right? At this point, I was like, floored, I was like, halfway is she fucking with me halfway.

J Smiles: 12:17

Like this not funny mama

Erika: 12:18

Is she serious , is she serious. Like, like, not like, it's like when when people say, you asked a question that another person just doesn't know how to answer. Like, those series of questions she was asking you were so matter of fact, and so basic, I didn't know how to answer them. So I was like, Yes mama, I'm like, I had surgery a week ago and that's why you and Aunt Judy are here to help me recover from a surgery. She's like, Okay, I got it. I got it. Now. I got it. And that blew me like that. Completely wandering.

J Smiles: 12:48

You wondering were you in my oxycodone, what's going on over here?

Erika: 12:51

Right, correct, correct. Like I need to go count my meds.

J Smiles: 12:54

That's right

Erika: 12:55

I need to go count my pills, so that was the first incident. The second incident was Mother's Day of 2016. It was May of 2016 and my aunt, same aunt that came to New York, and doesn't live very far from the family church, maybe 10 minutes, 15 minutes back, away from the family church. And my mom was the financial secretary for our family church had been, you know, for easily 30 years. She was the lady who always disappeared into the back of the church to hand count the offering to make the deposit in the bank. To manually hand write the checks so that the pastor got paid and custodial service got paid like she managed the church's finances, easily 30 years.

J Smiles: 13:43

Like flowers for the Easter service.

Erika: 13:47

If anybody got paid if anybody got paid by the First Church of God in Cincinnati, Ohio was because Maxine Watson.

J Smiles: 13:54

That's right.

Erika: 13:55

So she did their taxes. She did everything. So my mom's very much an accountant, although she was professionally an educator, her undergraduate degree was actually in accounting and so numbers

J Smiles: 14:05

Oh wow, I didn't know that. Just like Zetty.

Erika: 14:07

Just like your mom. That's right. So that was those were kind of her thing. My mom did not make mistakes with the checkbook. She did not mess up the church's money. I know people use that as a colloquialism, but in real life in everyday life, Maxine does not mess up the church's money. And she started making mistakes with the church's money.

J Smiles: 14:24

Uh oh

Erika: 14:24

There was an assistant working with her, who was going behind her and noticing mathematical errors in the registry that my mom was keeping the checkbook register, that my mom was keeping for the church. And she was like, getting invoices and forgetting to like pay regular reoccurring bills and things of that nature. But this one particular Sunday, Mother's Day Sunday, my whole family gets together on the you know, the big holiday family Christmas, Mother's Day, Easter. They were supposed to go to my same Auntie's house. And my mom never showed

J Smiles: 14:58

One question Erica as it were. leads to the bookkeeping at the church. Did your mom indicate that she was having an issue keeping up with the books or did someone else notice it?

Erika: 15:10

No. Someone else noticed it like this the sense that I mentioned though young lady who was kind of

J Smiles: 15:15

Okay.

Erika: 15:16

An apprentice to my mom was like, Yes, the church clerk and training, so to speak, called me.

J Smiles: 15:21

Oh, she called you. Okay. Was she just calling? Was she just making the corrections along the way?

Erika: 15:27

Yes. Because my mom was very adept at covering up her lapses in memory. She had grown a very strong muscle of making it seem like she had it all under control, and she knew what was going on. And assuming that her questions were like, casual to our way question. So she would do things like ask for directions to places she's been a million times. And then someone would look at her with a confused look and give her the directions and then she's like, oh, yep, that's right. That's right. I always forget that left, left hand turn things like that

J Smiles: 16:02

That is exactly. You know what, that's the same thing, ultimately, that the neurologist that treated my mom initially said, that's probably what Zetty was doing. Because I like you, I was not living in my hometown when stuff started, when the wheels started coming off the truck with Zetty. They were like Jay most likely your mom had been covering. And this she also grew this large muscle that you speak of that mama Maxine grew interesting. Okay.

Erika: 16:33

Yeah.

J Smiles: 16:33

Okay, keep going.

Erika: 16:34

Not uncommon.

J Smiles: 16:35

She didn't uh

Erika: 16:36

Not uncommon at all with cognitive disorders, cognitive decline issues, particularly when the person who's affected by it is so high functioning.

J Smiles: 16:45

Yeah.

Erika: 16:46

That high functioning doesn't immediately go away. Right. It just gets applied to ways that are actually not helpful at diagnosing the problem.

J Smiles: 16:54

Know what they are is good. Okay. They look, they don't stop being good at it. They just they good at something new.

Erika: 17:01

That's exactly right.

J Smiles: 17:02

That's right. So you said that they were getting ready to go for Mother's Day.

Erika: 17:09

Yeah, that's it. They're getting together for Mother's Day dinner at my aunt's house and my mom never got to get. I'm still living New York, I called my aunt's house on Mother's, Mother's Day and talk to the whole family like I normally would. And my aunt comes to the phone and she gives me this syrupy sweet- Hi, sweetie pie how are you?

J Smiles: 17:28

Now is this an aunt that you're

Erika: 17:29

Listen

J Smiles: 17:30

that you talk to often?

Erika: 17:31

Don't worry

J Smiles: 17:31

Is this an aunt you talk to often?

Erika: 17:33

Often

J Smiles: 17:34

Okay, all right. So this is somebody

Erika: 17:36

Same aunt that came to New York with my mom. I gotcha, so this is someone you're close to and that you talk to often. Gotcha. Often that's correct. Yeah. So she's not that don't want you to worry, don't get upset.

J Smiles: 17:47

Which is when, that's when you immediately start worrying, right? I don't know why people do that

Erika: 17:52

Then getting upset.

J Smiles: 17:54

Don't worry

Erika: 17:54

Its like no matter how syrupy sweet the tone is that you put in your voice when you say those things

J Smiles: 18:00

When you say don't worry, my worry is on 10.

Erika: 18:04

That's right. That's exactly right. It's the equivalent of somebody texting you, we need to talk. That's right.

J Smiles: 18:13

Exactly.

Erika: 18:13

Um, don't worry, there's nothing for you to do, we just can't find your mom.

J Smiles: 18:19

What?

Erika: 18:21

Right, right. Like what you mean you can't find

J Smiles: 18:25

my mom.

Erika: 18:28

What do you mean cannot find her? I am confused. I am. Please explain it as though I am a kindergartener. I don't understand what youre saying, the words coming out of your mouth

J Smiles: 18:38

And what do you mean it's nothing I can't do? First of all, I'm about to call the O h, one o Sheriff's Department. I might do something.

Erika: 18:49

Listen, listen,

J Smiles: 18:51

Jesus

Erika: 18:52

It was a mess. We don't know your mom. She never shown up at my aunt's house after church. But my family was out looking for her. So like my uncle and my cousin, they were all driving like, in a circle between their , my aunt's house and the church, looking for my mom and one of my cousins had driven across town to my mom's house thinking like, well, maybe she just went home. And this went on for several hours. And borderline like should we call a, you know, a Silver Alert? Oh, in Ohio, we have silver alerts like for elder that get lost kind of like an amber alert for children. So should we call in a Silver Alert? This went on for several hours that we couldn't find her. And my mom is so old school with it that the cell phone was like not an option because at this point, she had a cell phone, but my mom's cell phone was perpetually not charged, perpetually in the glove compartment of her car.

J Smiles: 19:51

Yeah, I'm sure by this time it had melted right. It was hot in the summer and super cold in the winter like it might not have functioned

Erika: 19:59

Correct. Like literally you would have to schedule an appointment with my mom to call her on her cell phone. So she would know to turn it on, take it out of the glove compartment of the car.

J Smiles: 20:10

She only had it because you purchased it one Christmas.

Erika: 20:13

Yes, ma'am. Yes, ma'am. Yes, ma'am. That's right. That's exactly right.

J Smiles: 20:17

Oh, silver alert, I don't know if I ever heard of that. That's amazing. That's cool. I got to look into and see if they have it in any state I've ever lived in in the south. You had to have been scared out of your total wit.

Erika: 20:30

I mean, I'm in Brooklyn, I cannot quickly get that year to be of help be abused. Like, who knows what happened? Like, did my mom have a car accident and is she in some ditch somewhere? Like what is going, what is going on? We don't know. Several, several hours later she eventually shows up at her house. And my cousin's still is at the house and waiting for her to come home. And when she pulled into to her driveway into the house. You know, my cousin is super emotive and panicked. And oh my god, happy to see you What's going on? Where have you been? And my mom is 100% confused about why she's there? Like, why? Because it's there. And why are you acting like, I've been on a trip for months and weeks and days. Like what what is going on what is all the fuss about? It was completely lost on her that she'd been missing for hours and hours, but come to find out that she couldn't find her way she lost her way from the church to my aunt's house. And we're kind of like driving around in circles trying to figure it out. And then ultimately, forgot my aunt's house was even a destination and was able to figure out her way home, was able to identify one familiar street that led her back across town to her house. So when she pulls into the driveway at her house, she's unclear that hours have passed by and that there was a whole situation is

J Smiles: 22:05

That it's even Mother's Day and she has missed a celebration and that anybody's even looking for her.

Erika: 22:10

All of all of this is like the Easter Bunny. Like its gones, doesn't make any sense

J Smiles: 22:16

what are you making such a fuss? I'm just about to go into the house and just sit down. Give me a glass of iced tea and rest my feet.

Erika: 22:25

Yeah, that's right.

J Smiles: 22:26

And you making all this commotion.

Erika: 22:28

And you're here and then what are you doing? Yeah, all completely lost. And that was the proverbial straw that broke the camel's back that's when I came back from New York, I literally was on a flight home from New York that Monday morning, the first flight leave LaGuardia at 6am. I was on it.

J Smiles: 22:46

The very next day.

Erika: 22:47

Yes, ma'am. We got emergency appointments with a mom's primary care physician. And we started looking for referral to like who's the best neurologist in the city that deals with memory issues. And how do I get my mom on that person appointment book, so between May and September when my mom was diagnosed, all of the remedial stuff, intermediate stuff that you do when you recognize some kind of cognitive decline in your loved one. That's what was happening between May and September of 2016.

J Smiles: 23:21

What do you mean when you say that? For anyone who's listening, that may be just starting when you say the remedial things that you know what are they

Erika: 23:34

Yes, going to your primary care and care physician intially they should

J Smiles: 23:38

So the first thing you did, you go to your primary care physician makes sense

Erika: 23:42

Primary care Yeah, yeah, like we did all the blood tests like a full panel of like our all of our vitamins and minerals and level as they should be. When we went from there to everything checked out here your panels, check out here. Let's get you to a neurologist. We got her an appointment with a neurologist which was difficult, I will say because getting an appointment with specialty specialists is much harder than getting appointment with your primary care. And the neurologist the Memory Care Center that my mom goes to the neurologist that is there, no lie the wait for an appointment for her is six months. So if you call them today, they got to talk to you about an appointment in November. They going to try to give you an appointment for like December 13.

J Smiles: 24:29

I experienced the same thing that what what did they tell you was the reason for the delay on your end? I know what they told me which I thought was total crap. I was like, we got to do something because six in six months. You tell me how you felt

Erika: 24:43

Like a totally different like, I mean, I was pissed I was furious. Are you kidding? I was writing letters to the Chairman of the Board of University of Cincinnati health system. I bet you were. My network is vast my network is vast and I know every damn body like there has to be somebody I know that can make this line go away.

J Smiles: 25:01

That's right because in my brain what I was thinking was listen, this. In my case with my mom, I'm like, hey, for 61, 62 years, this woman has been fine. You know, I'm, you know, I'm broad brushing here, broad strokes, like, but she's been just fine. And to me what is looked like in 90 days, she's gone from sugar to shit and you're telling me you want me to wait six months? In six months you know what I mean she could be a vegetable. I can't wait six months to see a neurologist who then may tell me, oh, we can't help her. You need to go and see a podiatrist. Right? I'm making this up , but

Erika: 25:45

Let me give you these pamphlets on palliative care, like direct, like no, not doing that.

J Smiles: 25:51

Exactly. You got to at least see my mama to tell me if you're even the correct specialist, or can somebody give me a pill? That's going to let us hold on until girl, I'm with you.

Erika: 26:07

Correct. Yeah, no, it was it was a literal nightmare. It was a literal mess.

J Smiles: 26:14

Yeah you talking about you had connections, your mother had healthcare was as you said, she was a you know, a retired principal within the education system. So you're saying you're well connected. You knew who to call, you knew what to do. You had, she had health care. And you still had a six month wait. So that just goes to show you how stressful and harrowing this whole process can be.

Erika: 26:41

It really is. Especially before you get a diagnosis because you don't know what's going on. All you know is your loved one, your ello as you've been calling it.

J Smiles: 26:54

Look, yes your remembered. Hold on, you get Okay, wait. (cheer sound effect)

Erika: 27:00

I get sound effects.

J Smiles: 27:03

That means you've been listening to the podcast because you used ello.

Erika: 27:06

I've been listening. Look Janay I am your greatest fan.

J Smiles: 27:10

Okay, wait, whatever you do. Thank you.

Erika: 27:19

I feel like, I feel like I text the show notes after each after each podcast. I listen on my morning walk.

J Smiles: 27:27

To anyone listening. She actually does. She does, she actually does this, she does this. And we use language that we could never say on this podcast, just in case. Just in case. Right, just in case, either one of our mothers, you know, their brain powers come back and they listen, they would be very distraught over the language that we use in public. So

Erika: 27:49

So it's true, its true.

J Smiles: 27:52

So you get to a neurologist so thats a part

Erika: 27:56

So the neurologists and you know, yeah, it's a very trying time, because you don't know what you don't know. Right? You don't know the cause of the problem. All you know, is

J Smiles: 28:06

You're thinking it's a neurologist, right? You thinking a neurologist, but what if it's not? I remember that so much, EriKa, like, what is that? What if that's not it? And it's something else? Oh, I haven't even defined it. yet. It's very, very scary.

Erika: 28:23

Yeah. And we did the things too. I we went to we did therapy, like we went to, we did a family counseling session, me and my mom went together to a therapist, I'm like, well, maybe she's just depressed. And so that's what's going on. Like he's getting older and she's, you know, recognizing that she's forgetting things. And she's kind of missing a step on who she used to be. And maybe like, maybe that's what it is, with the therapy and like, my mom is like an old school, Southern Baptist, black woman, she'll, it's unfortunate, she don't do therapy, right? Like she's from the black tradition of can't you just go to your pastor and pray about it. Like she believes going to have a meeting with a pastor and prayer fixes everything. And so like getting convincing her to go to therapy session, first of all, was I deserve some sort of negotiation prize for that. But then when we get there, am I what I was, what I was observing in her, the therapist was able to confirm like, no, this isn't, this isn't normal of depression, like this is a manifestation of depression or anything like this is what we call cognitive decline. So the therapist did at least given a name like because when the therapist was talking to my mom, there were simple things that she couldn't name. Like the therapist asked her like, what year it was

J Smiles: 29:45

Right

Erika: 29:45

And she would say things like 21

J Smiles: 29:48

Gotcha.

Erika: 29:49

That was the year. And so the therapist was able to say like, no, this field this looks like cognitive decline. So I kind of felt like I was on the right path with a neurologist. By the time we got there

J Smiles: 30:00

Understood.

Erika: 30:01

Umm

J Smiles: 30:03

I want to just take a second to say shout out to you for being forward thinking enough and open enough to suggest like in the meantime, while you're waiting in pushing all the buttons to try to get to a neurologist or any other specialists you can think of to say, okay, maybe therapy, maybe this is a function of depression, a symptom of depression is forgetfulness that does happen, cloudiness, mind fog, and that is often a an angle that is left out. So even though ultimately that didn't end up being a part of it, I think you should be commended for giving that a shot. And I can't imagine that your mom did not appreciate you offering that as a suggestion.

Erika: 30:53

Ma'am, ma'am. In the most polite Christian erudite manner, I got the cuss out. Okay. But that's okay. That's okay. I'll take that.

J Smiles: 31:03

Absolutely, yes. So you you're doing all of this just to even get to the diagnosis. So I want to step forward a little bit. When you got the diagnosis. Was it actually Alzheimer's?

Erika: 31:14

Yes.

J Smiles: 31:14

Okay. When they told you that

Erika: 31:17

That test that actually the test actually confirmed it for them because they, you know, they did the normal things. They did the MRI, and, you know, all that stuff. And those things were kind of leaning that way, but they weren't conclusive. Like she didn't have the tell tale, like white plaque is on the brain in the MRI. Yeah.

J Smiles: 31:37

Okay

Erika: 31:38

But the test that they ran that conclusively told them it was Alzheimers was a spinal tap.

J Smiles: 31:44

Okay

Erika: 31:45

I don't know if they did that for for Zetty.

J Smiles: 31:48

No, they did a pet scan for her. But that, it was about it would have been about three and a half years between the diagnosis from our mom's.

Erika: 31:58

Okay, so my mom, they did a, they did a spinal tap because apparently, as the nerve endings in the brain calcify and deteriorate, which is the hallmark of Alzheimer's, they produce a protein in the cerebral fluid. And this protein is not foreign. Most people have it, most of us have that. But in our sleep, our body detoxes it, our body, you know, clears it clears it out, which is part of the reason why sleep is so important in the maintenance and hopefully like the the delay or prevent for preventative care of Alzheimer's is because this protein cleansing process of the cerebral fluid happened in our sleep. But this protein was at such a high quantity in the spinal tap in the cerebral fluid that it was conclusive for an Alzheimer's diagnosis. So that's what did it for my my mom. And so we got that result. And we got that feedback from her doctor on September 21, of 2016. What was interesting is, we go to the neurologists to get the results from the battery of exams, including the spinal tap, this particular neurologist has a counselor from the Alzheimer's Association that works in her

J Smiles: 33:18

That is extraordinary. office.

Erika: 33:22

It is it is like she runs the clinical research and Memory Care Research Center for the University of Cincinnati health system

J Smiles: 33:30

that is fire

Erika: 33:32

So she's the best at this in our city, in our humble little city. She brought in the social worker from the Alzheimer's Association chapter here in Cincinnati into the meeting, before giving us the diagnosis because they immediately wanted to go from the science of the diagnosis to the care of the patient.

J Smiles: 33:58

That is fantastic. We didn't get that I didn't get that and that would have been very, very helpful.

Erika: 34:03

So yeah, so they were great. So they gave us the information and news together with the social worker from the Alzheimer's Association. And then they interestingly enough, they separated us, my mom had further conversation or the the doctor had further conversation with my mom, and the social worker had further conversation with me. So it's kind of like, this is a lot of information in here patient. I want to help you understand the science of what we're seeing. And I want to answer all the questions that I'm sure you're gonna have about, what does this mean for your quality of life? What does this mean for longevity of life with those sorts of things? The doctor was kind of having that conversation with my mom. So the social worker was telling me, we're going to tell you about all the resources that you should, and can't avail yourself of, because you're now a caregiver to a person with Alzheimer's. A person who is at the beginning of their Alzheimers journey. So there are caregiver support groups that maybe you want to think about joining. Here's what it looks like to put a network of care and support in place for both your mom and for you. So it was, it was much more of the human caregiver side of what a diagnosis of Alzheimer's means for me. And it was much more of the clinical side of what does this mean for quality of life and longevity, for my mom with the doctor,

J Smiles: 35:40

They should get the Nobel Prize. Maybe there are other doctors or memory care centers or research facilities that are doing that. I would like that to become the standard of care for the diagnosis, the great reveal, you know how now they are revealed how they're doing the gender reveal of the babies, they put in the color in the balloon, and the cake and all of that, I want a reveal of the Alzheimer's to be I love how you said there's the science and there's the care. So you have something that the doctors are going to say. And something else that will come from the social worker attached to the Alzheimer's Association. That is fantastic. I did not get that you're the first person that I've heard articulate an experienced like that. I'm not saying that it hasn't happened. But man, it is such a dramatic experience. I remember my heart beating, I am sure that I didn't hear 98% of what they were saying. It would have been amazing if I had a social worker or someone giving me the care side, I just had a physician talking to me. I couldn't digest it. So so you hear this stuff coming? What were you feeling in that moment?

Erika: 37:06

I think I went immediately on autopilot. Like you just described, her mouth was moving. And she was saying words. And I was being very much an executive with her. My work background. And I'm an executive director of the National Education nonprofit. And I very immediately went to operational execution mode with her like, Okay, so what I hear you saying is, I need to hire this type of person, I need to, you know, secure the house in these sorts of ways. I need to, you know, take over financial management and create room and the budget for these sorts of expenses like that, but it immediately became a project plan. So I could control that, like I could exit.

J Smiles: 37:50

So it sounds like in that moment you were not feeling actually. You said, Oh, you know what? I'm not about to feel any of this. What I'm going to do is execute a flawless plan to make sure that this project is handled with extreme efficiency.

Erika: 38:10

Yeah

J Smiles: 38:10

Yeah, that's fine. That's the way to do it.

Erika: 38:12

Yeah.

J Smiles: 38:14

Well

Erika: 38:15

That was my response. Yeah

J Smiles: 38:16

That's realistic. That's very realistic.

Erika: 38:18

Now thinking back on it hard. I think that was my response because it was self preservation. So it's how I protected myself from

J Smiles: 38:27

That's fine.

Erika: 38:29

The, you know, like the devastation of my hero, like the woman who raised me, the woman who has sacrificed everything, for me to be who I am, like, the version of myself that I am today is, you know, handcrafted and man made,

J Smiles: 38:45

I would like to say is bad ass bitch. I like to say, Yeah.

Erika: 38:52

I'll take it. I'll take it. I'll take it, bas ass bitch who got sprayed in the face by her two year old today.

J Smiles: 39:00

Well, listen, listen, but you can do it and smile. Okay, you know, to me, because of the badassery

Erika: 39:10

Oh, my god bad ass bitch has legos in the window seal of her office....mmhmm thats me

J Smiles: 39:16

you will speaking of New York, you I want to back up a little bit. You got this news about your mom's health. Share with our listeners for just a few minutes what your lifestyle was, just before your mother got this diagnosis. You were living in New York.

Erika: 39:36

Oh, yes. I was living in New York. I was the quintessential

J Smiles: 39:41

You know what, let me just say you know, J Smiles is gonna go ahead and say it.

Erika: 39:46

Okay, please do.

J Smiles: 39:47

It was Sex in the City.

Erika: 39:49

Very much so, very much so.

J Smiles: 39:51

You're black, your'e black. But that's the life you were leading in New York so but go ahead you say it your way

Erika: 39:58

It's very true. No. I think that's right. I think that I identify if I'm going to combine the Sex and the City characters and the girlfriend characters. I feel like I'm a self described Tony child like impeccable wardrobe very well traveled. Very, you know. Well if you are are tony then who are you on Very self centered

J Smiles: 40:22

Yes, you are. love you to death and I appreciate you telling them that

Erika: 40:26

On Sex and the City, I am Miranda Hobb. Like super uneympathetic, super straight shooter. Super, like, tell it like, you know, ask for your nonsense. Yeah, no, I want my life how I want it. I want my life exactly how I want it.

J Smiles: 40:45

And good and a way with you and your foolery.

Erika: 40:48

Away with you and your foolery. Correct. Correct. Zero time for nonsnese

J Smiles: 40:53

But both of you

Erika: 40:54

I feel like the thing that made me say that's perfect for people who are like Sex in the City fans like I was the thing that makes makes me identify most closely with Miranda is the episode where Steve before they get married and before they have Brady. He has testicular cancer.

J Smiles: 41:12

Yes.

Erika: 41:12

And Miranda goes with him to the doctor, because he's thinking about getting a prosthetic ball to replace the the one ball that they had, because of the cancers.

J Smiles: 41:25

Beacuase he doesn't want to have one ball

Erika: 41:26

He doesn't want to have one ball. And when the doctor tells him like, Well, you know, it's experimental and to do that, and Miranda was like, okay, we're leaving, that's enough. And Steve was like, W y? What are you talking about She is like see it's a pinto, is that what you want a pinto n xt to your one good ba I was like she get's me, I feel seen. She is me and I am her. Yeah

J Smiles: 41:52

That's right, but you're not a redhead. But that other than that

Erika: 41:55

I'm not a redhead. I'm not a redhead. I'm an artificial blonde.

J Smiles: 42:00

I wanted the listeners to understand that really is the black girl

Erika: 42:06

Miranda hobb

J Smiles: 42:07

Yes, Antonio. Yes,

Erika: 42:08

I think that I think that would be mean.

J Smiles: 42:10

And that was that was the Brooklyn black girl magic life that you were living that you were crafting that you crafted and you were traveling internationally, and living life on your terms. And you got this diagnosis, you and your mom got this diagnosis within a year. I believe.

Erika: 42:32

I was back here. Yeah within a year you were back in Cincinnati and you built a house That's right For you That's a whole other story.

J Smiles: 42:41

Yeah we not we not going, we're not gonna go far in that. The reason I wanted to

Erika: 42:47

All of the terrible life altering things over the past two and a half years except for get a divorce. And that's only because my ass is not married to begin with.

J Smiles: 42:55

Well, you know what, you kind of did get a divorce. So we're not going to get into that. But you did a little bit divorce the due you kind of I mean, listen, we ain't got to say his name. But you were dating a dude, we had lifetime looking glasses on and then we got rid of him.

Erika: 43:09

Yes it's true

J Smiles: 43:10

Okay, anyway. But what I want to really share with listeners is that you wholeheartedly embraced care giving, that's what I want to share. That's the part of your story that I really want to wrap up this episode with is that while it wasn't your plan, and that's why I wanted to bring up what your life was before, and in a very loving way to say how self centered and selfish you used to be. Because as Miranda and Tony childs, baby they weren't looking out for , you know, they were doing a thing, okay. Your mom gets this diagnosis. You move back to Cincinnati, you build a home, you know, you want to be a mother, you have a child, you build a home, because you're like, Okay, if I had to be in Cincinnati, I need my mom, I need a home that works well for my mom with her needs as a sufferer of Alzheimer's. And I have a young son, and I need this house to work well for me in my life as a sandwich generationer right. And

Erika: 44:20

That's very true.

J Smiles: 44:21

There are not a lot of houses that are already built that are made for the sandwich generations because we knew this is a new phenomenon that you need a house that works for a senior person with parameters and constraints. And then the little bitty toddler that's running all around but you need rounded corners. I mean, so they they can't hurt themselves. But then you got a mama that needs a good bourbon. She needs a nice wet bar. You see what I'm saying? And a nice deep tub to let all the suds take the pressures of life away. So literally on a dime, baby, you did a pivot. Okay, you did a pivot that is a was an Oscar winning performance I saw you do it. It was not in the public eye

Erika: 45:03

Thank you for, thank you, thank you for the credit cuz I definitely feel like I put my head down and did the work like you didn't you didn't have an opportunity to stop

J Smiles: 45:15

You couldn't, you couldn't because if you sweetheart, if you had stopped and tried to feel or think it through, you might not have done it.

Erika: 45:25

Oh my goodness. Oh my goodness who knows what might have happened

J Smiles: 45:27

It might have been so scary. But it would have been so scary. Or it would have been so antithetical to the life you had planned.

Erika: 45:34

Oh my goodness. I feel like if I stopped to think about it, I'd still probably be like holding myself and rocking back and forth in the Maldives somewhere. But I'm I feel like, I feel like

J Smiles: 45:42

gonna tell you if you don't ever rock back and forth the Maldives baby, but that is where the hell you rock. Okay. I would, I would like you to share a little bit around when you were making those decisions. You were coming up with the plan. Okay, my mom's diagnosis But I got to have these things.

Erika: 46:04

Well, yeah

J Smiles: 46:06

Take us through that. Take us through that process,

Erika: 46:08

What I would tell all caregivers, no matter where you are, in your journey, the very beginning of your journey with your loved one or the middle or the end stages with your ello, you have to be much more kind and much more gentle and much more gracious with yourself. And that was a hard lesson, I think for me to learn because that is not my natural disposition. I'm very critical of myself, I'm very critical of others, I expect a lot from myself, expect a lot from others. I can create a plan I can execute against the plan flawlessly. And when things don't fall in line the way they're supposed to, I am great at just cutting them out, and keep getting the plan back on focus. And when you are dealing with this situation, none of that shit works. None of that applies. So the things that I am excellent at excellent in my professional life. And so you know, to the demise of some unfortunate relationships, even in my personal life, but don't work with this particular situation. And I would just encourage when

J Smiles: 47:17

You say this situation, we're speaking, you speaking of Alzheimer's,

Erika: 47:21

I am speaking of Alzheimer;s, but really acutely speaking of being the sandwich generation, having young children, and having a parent that is like a child that you take over responsibility for in a way that a parent would.

J Smiles: 47:36

But because she's your mother, while, you are parenting up because of the complexity of that is your mother, you do still remember her and have the regard of her, the respect for her and remembering her as the person who reared you. You don't treat her like you do, Zander. So there's a

Erika: 47:59

I do not, that's correct.

J Smiles: 48:03

So there's a there's an emotional complexity that is difficult for the sandwich generation. So go right ahead.

Erika: 48:09

Is that right? That's right, you're exactly right. And I guess that's what I'm talking about is like coming to terms with that. Allowing your, giving yourself grace and giving yourself room to feel however you feel and to know that it is okay. Like there are some days, I'm just overwhelmed, I'm exhausted, I'm tired. And I would like to be able to give myself permission to not be useful to anybody. And that you feel like that sometimes is okay. And that you give yourself that permission from time to time is okay. Because we take care of our loved ones, we take care of our children, you know, out of the overflow of our hearts, we do this not as a burden, or not as you know, a responsibility. But we do this out of love. And if you are not taking time to love yourself and to give yourself to fill up your own love tank, then you don't have the overflow that you need to show up for your loved one or to show up for your kids the way that you want it. If a can is empty, you can crush it with no problem. But if it can is full, there's some resistance, there's something to sustain it and your heart and your emotional reserves operate very much the same way in all of your giving, give something to yourself and all of your care taking care for yourself first, and don't feel guilty about it. And don't feel like you're being hedonistic or narcissistic when you do it. It's because if you don't put your own, you know, face mask on first, you're not going to be able to help and care for your ello or your kids at all. And then the whole ship gets run aground then you have a titanic moment. Like if you collapse then we have the Titanic right now. It's just like you know, a two car fender bender at a stoplight intersection. But you can turn this shit into the Titanic if you don't take care of you first. Learning that lesson and being okay with prioritizing, caretaking of me, was a slow lesson that I learned with a lot of resistance. And I wish I would have thrown the resistance out of the window much sooner than I did the think it would have helped speed up my process of becoming. So that's the one thing that I would say if anybody can, like learn anything from what I've been through over the past four years now, take care of you first because you give and take care of your loved ones and your kids out of the overflow of your heart and you do this out of love for them not out of obligation to them. And if you don't fill up that wealth tank, then it then it does become burdensome, it becomes too much and it very quickly becomes too much. And you very quickly can become that crushed can, that curshed empty can.

J Smiles: 50:47

What do you do to take care of yourself? very specifically,

Erika: 50:52

very specifically, I run every morning or I walk I go full flow issues, just call it walking and not running. But that's that's fine. I like take away the burden of feeling like I had to be you know, on somebody's record world record setting pace. And you know, if I'm not running five minutes, miles, that's fine. You know, some days and my walk is can be as slow as a 90 minute mile and that's fine too. But every morning I start you know Monday through Friday should say not on the weekends, but Monday through Friday, I start my my day with you know, I do three to four mile walk/run every day. And that's my quiet time I listen to my podcasts during that time. I sometimes I just meditate during that time. Sometimes I you know, just talk out loud. I pray during that time, but that's for me. Like that's for me. Like my blood pressure comes down. I don't do things that aggravate me. I don't return calls. I don't chant in a sec email. It's literally just my time to be quiet with me and get my mind right for the day. That's one very specific self care thing that I do. I schedule time off even if I'm not going on vacation. So I've mastered the art of the staycation where you know, my whole point is to be in my room with the door closed.

J Smiles: 52:06

Okay wait tell me more about that. Okay, wait. Okay, wait, now that this sounds fantastic

Erika: 52:11

That's what I'm actually doing right now. That's what I'm actually doing right now. This whole week has been staycation.

J Smiles: 52:15

Okay, so walk us through a staycation considering you are the sandwich generation soldier, your ello your mom and your two and a half year old kid live in the house with you. So really be specific on how you staycation? That's all I have.

Erika: 52:30

Yeah, I for my mom, like we have a network of caregivers that come that have been coming to the house, even through the pandemic, my house kind of functions a little bit like a nursing home. So our home health care aides come. I am that person that does the temperature checks at the door when they come in and you know, requires the face masks in the house. But we still have our regular home health care aides that come so they are still working normal s ifts. I am fortunate enough to b able to have an au pair for my on. She's still here and she's till working with him during he day. And then I take off. TO, I'm off from work this eek. Literally, I wake up with y son in the morning. He is a ittle bit of an early riser. nd the au pair doesn't sta t working until 8am. But you kno , I wake up with him in t e morning and we'll do our cere l and watch his cartoons and ait for the au pair to come on uty at 8am. And then that's wh n I head out for my walk. On When you say I'm not here, they really don't have to e I head out for my walk like I'm not home, act like I'm not ere, I literally come home. An you know, to your point abou the house that we live in, I uilt the house from the groun up. And I designed the layout o the house very specifical y to support me being a caregive for a parent and single mom to a toddler. My bedroom lik the owner's suite of my hou e is isolated. It's on the si e of the house all by itself very other room, every other com on area in the house is a comple e opposite end of the house I'm not hear do you understand? It is like the separation between my house and my room. And my bathroom and my closet. Like the stuff that I need is like the east wing from the West Wing. It is literally on the opposite side of the house. And then I'm able to come in and out of the house from my wing from my side so I can go outside and do my walk/run

J Smiles: 54:35

They literally don't know when you come back in

Erika: 54:38

If I'm here or not. That's right. I come back in. I don't see them. I don't interact with them. I don't talk to them. I shower from my walk/run whatever I did that day, I put on a fresh set of yoga pants and a fresh t-shirt and I immediately collapse in the comfy chaise lounge that's in my sitting room. A day since in my bedroom and I watch garbage television, any reality television so anything with good fashions and cocktails in the middle of the day. That doesn't require me to watch the whole series from beginning to end and follow a plotline that's what I'm about.

J Smiles: 55:15

And that's your staycation. I love it

Erika: 55:17

And listen, they are responsible for keeping my mom and my son fed from breakfast until dinner, I emerged from my from my cocoon, probably around 5, 5:30 to make dinner for the family if I feel like it if I feel like and I do enjoy cooking so for me, cooking is also a form of self care because I like to be in the kitchen. I'm a good cook, I enjoy it. So you know I will turn on my music and dance around in the kitchen and make dinner for the family. And if I don't feel like it, you know, I will order grubhub or Uber Eats and send a text message to the caregiver and to the au pair telling them like that food will be at the doorstepso make sure that they eat. So that's kind of what the vacation looks like is I really stay in my space I stay in my wing doing the things I enjoy doing, which is resting, watching garbage television, catching up with you know a friend here or or there, getting my my little exercise my fresh air in in the morning time. Yesterday, like I ordered a bunch of nonsense from sephora.com and it came in the mail. So I spent like an hour or so playing with makeup yesterday in my bathroom, that was fun. I emerged for dinner with my beat face, they were like going out somewhere and I was like no, I just got some new makeup and I was playing today. It was cute, it was cute.

J Smiles: 56:46

I'm cute. And I have on lashes and my face is beat because I want to self care.

Erika: 56:54

That's it. That's right. That's it.

J Smiles: 56:57

I love it. Well, thank you so much. Thank you so much for sharing that. That's a way that you have figured out to stay balanced inside your home being a part of the sandwich generation. A quintessential member, I might add of the sandwich generation. I love it.

Erika: 57:13

That's right, give yourself permission and space to be useful to no one.

J Smiles: 57:22

I love that. I'm still working on that I got to say, but I tell you what, the fact that I know it and the fact that you know it is a huge step. The fact that that we're even aware that that's the goal, right? Is a really big deal because I remember a time when neither one of us would even admit that that's where we needed to be. This has been fantastic. Thank you so much.

Erika: 57:51

I'm glad I was able to bring some levity to your podcast here. I'm so proud of you for doing this, I tell you all the time. I feel like I in my text messages with my edits and show notes at the very end I'm like I'm so proud of you did amazing. I leave with all the feedback and then end with all the adulation. But I but I mean what I say so proud of you for creating this space in this forum because it's so useful. And I think that, you know, caregivers, those of us that are part of the sandwich generation, those of us who are, you know, taking care of loved ones we don't often take advantage of the strength that we get from within the community from other people's stories. And just listening to your stories is helpful to me, it brings levity, it helps me to not take the situation that I am in the circumstances of my life so seriously, all the time. There are things that happen that are absolutely a mess, but there's funniness in the mess. I mean, I oftentimes think of the story that I shared with you when I took over my mom's finances, and I was trying to log into her bank account online and do it because I didn't know her password, and she doesn't remember her password. And then all the security questions they give you are things that you have to be not only non Alzheimer's, but you have to have a great darn memory to know. What was your sixth grade teachers name that was legit, one of the security questions. I don't know my sixth grade teachers name. I know my 77 my 79 year old Alzheimer's mother doesn't know either, right? You know

J Smiles: 59:29

That's correct.

Erika: 59:30

I could not answer the security questions like, what was the name of your elementary school? I don't know the name of elementary school. I'm certain it's not even still a school, so I couldn't get through the gauntlet of security questions. I had a call one 800 number, the lady was getting really short with me because I couldn't answer the security questions and I was trying to help her understand, I'm the daughter of a client of hers who has Alzheimner's.

J Smiles: 59:56

Right. right. A recent

Erika: 59:56

My mom's not going to be useful.

J Smiles: 59:59

Correct.

Erika: 59:59

A recent diagnosis, which means she is not going to be helpful.

J Smiles: 1:00:03

Right. Which also means Ma'am, I am going through my own trauma. I'm a daughter, I'm an only child. I'm going through my own trauma. I have the power of attorney. I've just flown because that's when it was all still new. You hadn't moved in, you know, you flying in from New York

Erika: 1:00:18

I'm flying in for like, days at a time. Like, come a couple of days and I would go back. Come back another weekend. Yeah

J Smiles: 1:00:24

Just to try to gether affairs in order and you like, lady, I'm just trying to pay these electric bill. Okay, and just trying to keep you damn lights on, so baby girl won't be in the dark.

Erika: 1:00:38

She persisted in asking me stuff l ke, what was the name of yo mama's best friend when he was in the sixth grade? Girl we don't know, we the collective dont know.

J Smiles: 1:00:53

You know what she ain'y have no damn friendsin 6th grade, but I'ma tell you what,

Erika: 1:00:56

Oh my goodness, like she couldn't be past the process at the bank right, given her correct to the humanity of the situation to actually be useful in a larger point where unfortunately, I called the girl out of her name on the phone. That was not that was wrong. I should have done that. I yelled at her over the phone , and she hung up on me like she should have. And I got mad. I got very mad

J Smiles: 1:01:20

Like you should have because she hung up.

Erika: 1:01:23

And I drove to a branch.

J Smiles: 1:01:25

Right. I do remember that. I'm so happy you're telling this story.

Erika: 1:01:29

Obviously, the lady that was on the phone from the call center is not the same lady at the branch.

J Smiles: 1:01:35

However, however, somebody had to get this heart

Erika: 1:01:39

I was mad mad and somebody was gonna get this smoke. So I drove to the branch and stormed into the branch. It's a miracle. I didn't get arrested, I burst into the branch and just yelled in the middle of the lobby, which one of you bitches hung up on me. As though the woman who hung up on me was working at that particular branch on that particular Wednesday at two o'clock. Now, in my reasonable mind, I know the lady that hung up on me is not in branch, but I was so angry and I was so stressed by the situation at hand that that just seemed like the only rational reasonable response to what was happening was to go to the bank and cuss out the lady that hung up on me because I called her out of her name over the phone because she wasn't being helpful.

J Smiles: 1:02:29

Well you had to get a good understanding that day. What Well, first was you need to get into that account that day.

Erika: 1:02:36

I needed to pay these bills that day.

J Smiles: 1:02:40

Okay.

Erika: 1:02:40

And I needed to know which one of you bitches hung up the phone on me

J Smiles: 1:02:45

I'm sure you entered the bank with flair. Im sure you entered with flair.

Erika: 1:02:51

Baby, baby, baby

J Smiles: 1:02:53

Broadway and all

Erika: 1:02:54

And listen Linda. And listen, Linda, listen, listen, I'm sure I had on a pair of very expensive sunglasses. And I'm sure I had a probably had on one of my mama's mink coat. And I'm sure

J Smiles: 1:03:04

I'm sure. I'm sure it was a cape and a shawl and a everything

Erika: 1:03:10

Everything and every thing. I'm sure I was looking like the Grand Dom of Astoria Way. I'm sure. That's all I could do like that's where I was. That's what I want to I want to people to understand. It's like being in the sandwich generation will take you to a place where you feel like it's okay to go into a branch bank and scream at all the people in the br, in the branch, which one you bitches hung up the phone in my face? Knowing good and damn well, none of them did. None of them did, girl. None of them did. But that didn't matter.

J Smiles: 1:03:45

It didn't matter.

Erika: 1:03:46

I felt better. I felt better after I had that exposure at the bridge.

J Smiles: 1:03:50

And I also bet that someone was able to address your concerns, and you were able to get that bill paid that day. I bet you got into the account.

Erika: 1:04:00

Correct.

J Smiles: 1:04:04

Because at a minimum in that part of Ohio with the way you entered that building, and once they you told them who you were and whose account it was, you know, things can happen.

Erika: 1:04:17

Correct.

J Smiles: 1:04:18

Your mama's name carries weight, that's another thing about it.

Erika: 1:04:21

Correct.

J Smiles: 1:04:21

You know

Erika: 1:04:22

Very, very quickly, very quickly. You can explain this scenario The branch's General Manager appeared and ushered me into his little glassed in office.

J Smiles: 1:04:33

Here would you like a like a coffee? You like some water?

Erika: 1:04:36

For all of it, all of my needs were met for that particular moment.

J Smiles: 1:04:43

They were like oh shit

Erika: 1:04:46

But yeah, but like who is this crazy lady

J Smiles: 1:04:49

Right this is not Ms

Erika: 1:04:51

Hearing stories like that help you understand that you are not alone in this spiral of craziness that has become your life.

J Smiles: 1:05:00

Correct.

Erika: 1:05:01

And all of this to say like this space is important. And the sharing of stories is important, and it heals. And it helps more than I think, you know. So thank you for what you are doing.

J Smiles: 1:05:12

Thank you for letting me know that thank you for sharing your story because you are even more personal than I am. They are many people who've known me for years. And they are like, wow, Jay, you're really opening up, you are telling a lot of your private information, the Holy Spirit is guiding guiding me to do this. And it's, I think it's well, that's why that is absolutely why I am doing it. I do believe that it is helpful, because it's a podcast, I don't have to see anybody, I'm only talking. So I'm you I'm just I have a little bit of a cloak of privacy, at least in my imagination, larger than that it's the greater good. Since I was a child, the notion of helping the masses, and helping mankind and helping a larger community has always assisted me past my fear. I've been extraordinarily shy since I was a little kid, but if I thought my engagement, my involvement was going to help somebody, all of a sudden, I could be in bolden and my my wingspan became enormously large. Whereas if it was just for Jay, or for one or two people, I didn't want to grab the mic. I didn't want to perform. I didn't want to talk at church. But if you said, oh, we're trying to do this to assist the elderly, I'll be in the front marching down the street, because now you you've given me a purpose. That's much larger than myself. And that's the case with this with Alzheimer's and with caregivers because they are even more caregivers than there are individuals with Alzheimer's. There are over 5 million people with Alzheimer's, but it's much greater than a one to one ratio of caregivers, right. So that's on like, millions and millions and millions of people that are being affected by this disease and like what you just described, basically gets into the mental health. So caregivers are experiencing tremendous, tremendous unraveling of mental health. So some of us who were already grappling with mental health diseases prior to becoming caregivers are falling way off the deep end and people who might not have been diagnosed previously, caregiving has tipped them over the edge. Because if you don't know who to talk to, you don't know what you're feeling, there's a lot of guilt and should you even be feeling this way and blah, blah, blah, you touched on it a bunch, but it's hard and you do have outbursts, because so much has been built up right. So that lady at the bank, who you on the phone with you we're doing the best you can and she didn't have any empathy at all, which is another huge reason why I am so wed to this podcast and to the get vokal platform that I do every Monday night is to say even until we have a cure. If they're just more people talking about Alzheimer's and dementia, perhaps there'll be greater awareness, greater sensitivities and greater empathy so that maybe the next time when people start saying, Hey, i'm at the bank, my mama just. The snuggle up- number one, find out what the senior equivalent is to the amber alert for your area. Is it the Silver Alert? Do you call 911? Do you call 511, 311 is there's something you can identify in your neighborhood, if there's something that you can identify in your community, with your police, your city, your county, your sheriff's office, make sure you know that. Make sure your family members know, your caregivers, anyone that could possibly have your loved one in their care. Number two, if your loved one is still living independently, or at home with intermittent care, think about the communication device that you have. If there's a cell phone, but they rarly use it, or if they're hard of hearing and may not answer the landline, what's your backup plan? Erika's mom didn't really use her cell phone, so that wouldn't have helped much anyway. What's your next option, perhaps it's a neighbor. Or there's some other system you can figure out with a family member, someone from church, but you don't want the emergency situation to happen and you're caught with your pants by your ankles. Number three, caregivers you got to give yourself a break. A physical break from the responsibility of being a caregiver. Going to work is not a break. Nope. Going to church is not a break. You have to be away from all activity where something is required of you. Perhaps it's a staycation. Maybe it's a walk, maybe you go to a park and just sit on a bench. Maybe you go to the mall, and sit in the food court. Think of something that takes you out of an environment where anybody would ask you to do anything. You don't even want somebody to ask you how you feeling? I mean, that kind of unplugged. It has been so much fun, you will have to come back and tell us more stories because now that you have been introduced to the parenting up caregiving adventures with comedian J Smiles family and they know about your son, about your mom, about who you are your background, how you became a caregiver next time you come on, you can just give us stories. Right? Maybe just get right to the silliest the silly or the serious, whichever way you feel. You know what I mean? Because I plan on continually feed and fuel each other with support. How about that?

Erika: 1:11:53

Absolutely. It's a date.

J Smiles: 1:11:54

All right. Well, Love to You, to mama max and my main main man, zan zan

Erika: 1:12:03

Oh, Zander first. I'm surprised that you put mama max and me before him. But yes.

J Smiles: 1:12:08

Well, Mama Max has to come first on this podcast.

Erika: 1:12:12

Okay.

J Smiles: 1:12:12

I mean, that's, I mean, that's how this goes. Yeah, but you know, you know what's going on over here. So don't worry about that. I love you, sweetheart.

Erika: 1:12:25

I love you more.

J Smiles: 1:12:27

Okay, talk to you later. Sweet.

Erika: 1:12:28

Take care. Bye

J Smiles: 1:12:33

Bye. The snuggle up- number one, find out what the senior equivalent is to the amber alert for your area. Is it the Silver Alert that you call 911? Do you call 511, 311? Is there something you can identify in the neighborhood? If there's something that you can identify in your community, with your police, the city, your county, your sheriff's office, make sure you know that. Make sure your family members know, your caregivers, anyone that could possibly have your loved one in their care. Number two, if your loved one is still living independently, or at home with intermitment here, think about the communication device that you have. If there's a cell phone, but they rarely use it or if they're hard of hearing and may not answer the landline. What's your backup plan? Erica's mom didn't really use her cell phone, so that wouldn't have helped much anyway. What's your next option? Perhaps it's a neighbor or there's some other system you can figure out with a family member, someone from church, but you don't want the emergency situation to happen and you're caught with the pants by your ankles. Number three, caregivers, you got to give yourself a break. A physical break from the responsibility of being a caregiver. Going to work is not a break. Nope. Going to church is not a break. You have to be away from all activity where something is required of you. Perhaps it's a staycation. Maybe it's a walk. Maybe you go to a park or just sit on a bench. Maybe you go to the mall and sit in the food court. Think of something that takes you out of an environment where anybody would ask you to do anything. You don't want somebody to ask you how you feeling. I mean t at kind of unplugged. Number fo r, if you enjoy this podcast, if you've gotten one single tid it of help or support, please sh re it. Spread the word, click on it, send the link to someone it will help. You are my market ng budget. Yep. Thank you. Num er five, join us every Monday ni ht for our live streaming show n getvokal.com at 9pm eastern standard time in the United States cannot wait to see you chat with you, hear you questions, and your commen s about caregiving. Also sign p for our Parenting Up email lis . We'll have details in the sh w note, that's it for now. Than you for listening. Pleas subscribe for continuou caregiving tips, tricks, trend , and truths. Pretty, pretty lease with sugar on top sha e and review it too. I'm a co edian, Alzheimer's is heavy but we ain't