PART 1: A conversation with caregiver DeWanda Smith: The Zetty Whisperer

Y'all are in for a treat today. Guess who I'm going to be chatting with? DeWanda Smith or the Zetty whisperer. Hey DeWanda!

Hey, how you doing?

I'm doing fantastic. When you first came to the house and you met Zetty, what did you think?

Well, I remember it. I can close my eyes and see it now. You took me upstairs, that he was lying down on the Autobahn just, you know, just the Queen diva. And what you saw me as you served introduced, and she had the biggest smile on her face, as she always does. And you know.. just very...she reminded me, I kept thinking, Oh, a Southern Belle. Hi, how are you ? You know she was delighted to see me like she knew me all of her life. Like, right away.. omething clicked. I already knew then, you know, that we were on our way.

ParentingUP- Caregiving adventures with Comedian J Smiles is the intense journey of unexpectedly being totally 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 Alzheimers Awareness on anyone and anything with a heartbeat. Caregiver newbies, OGs, village members trying to just prop up a caregiver, you are in the right place.

Hi, this is Zetty. hope you enjoy my

The Zetty Whisperer. I want to ask you about.. what the interview was like? or What did the owners of the Home Instead agency tell you about my mother's case?

You know, I was Just about ready to change agencies or whatever and decide to go with someone else. At the time, the owner of the agency came to me and said that she needed someone to be a caregiver. And she just said The Smiths.. she used your last name. And she needed the person to be.. She used the words smart, sophisticated, *laughs* And she said that the people that I was going to be going to do the interview with were very well bred people, they have all these degrees, and so on and so forth. And she was so hyper about it. And she says you're the only one that I have right now that fits that deal. I am thinking to myself, Oh my God, I can't go over there. *laughs* I may not fit in! She said you're the only one I have.

That's amazing that that is the way she described us because I did not tell her any of that. I didn't use any of that language. So that is comical to me that that was her takeaway. But I tell you what...whatever made her decide that you were a great fit for us, I will accept it with open arms because she was right. Everything that you did when you were with mom was fantastic.

Yeah, you know, sometimes, you know when the person and see its just a warm feeling period and everything in my body changed as far as me thinking Oh, I'm not going to be able to fit in. I thought right away. Oh, yeah Im going to be able to fit in.

Yay! I remember that when you started, your goal was to work 8 to 10 hours per week.

Oh, yeah.

So what..what really happened DeWanda?

*laughs* That was definitely my goal. Because as I'm not sure we talked about, I think I did talk about it. Because I had retired...left California came to Atlanta, blah, blah, so on, so forth. And I was going to work a part time job, this was going to be part time and I was going to work maybe even just two days a week, you know, 8 to 10 hours at the most. And I figured Okay, tha 'll work real good. Two days week, 8 to 10 hours and the the rest of the time would be you know...my free time or what ver.

You met me and you met Zetty. So that was right after we left Los Angeles and Cedar Sinai & mom was coming home and she was recovering from the brain surgery. So you were the first.. the very first caregiver hired and you were part of the intricate member of the team that helped Zetty recover from the brain surgery.. So so you get here and then you start with us. And you definitely worked way more than 8 to 10 hours.

Oh yeah.

*laughs* But what? Why did? Why did you agree to do that DeWanda?

Well, it's a long story short. Now I agreed to do it, first of all, because.. well it kinda started with caregiving for both of you. And because I just felt so vain.. You really were the only one there. And I knew how particular you were about who would be there for Zetty. You had a lot a lot going on and a lot of stuff to do. And it just felt like I needed to be there to get you and Zetty to another place. So it just turned out that two days werent going to be enough. And it turned into three days werent going to be enough. And then some days, I had to work at nighttime too. And then four days weren't going to be enough. So it just.. it turned into I wanted to do it.. because I felt like I was helping you as well as definitely helping Zetty and I became very attached to her and wanting to do the best for her and wanting her to just feel like she has some independence as well.

Right. To me, that speaks to your style of care, which is why I call you the Zetty whisperer. You could get my mother to do stuff that I couldn't get her to do, which was amazing. Because I'm JayGee and you're..*laughs*. Under most circumstances, whatever I want, is what she will do. But very early on, you're right, the connection was there. It was obvious between the two of you. Within your first few shifts, I feel like I was leaving to go to Las Vegas to open the business Score, you ended up working like three weeks in a row or something.

Well, I remember that very well. Everything was kind of new still. I didn't know everything about and I didn't know very much about Alzheimers. You know, I had relatives that had it, but I didn't know very much about it close up and personally and actually having to take care of someone with it for any length of time by myself. So it did turn out, you did have to go to Vega. I was in the house with Zetty by myself. And we'd have somebody drop by once in a while, you know, make sure we're doing okay, right? Pretty much that was it. And let me tell you me & Zetty, we did have our time. It was a trial. It was trial and error.

When I was referencing the three weeks, I don't think you worked three weeks consistently. But you came in three weeks straight. Maybe you had the day shift that I think Aunt Cheryl came from California and did the night shift. And then maybe you did three 24 hour shifts and then Aunt Cheryl came again. *laughs*

Yeah, that part is true.

Yes. But I remember, I remember back when a couple times, you would tell me that you came in and Zetty was sitting on the floor, and you didn't know how she got down there.

Yeah, more than a couple of times. I'd walk in the room, and there Zetty was on the floor and trying to get her up at the time so that we can even get to a point where I can get her up to sit down in a chair so that we can move from the chair. And maybe I can stand her up. She didn't understand what I was asking her to do. I didn't understand how to get her to do what I needed her to do. It took...Occasionally, we would finally work it out. After about five or six minutes, I'd come up with something in my head. Cause I would ask her.. I walked in one morning and she was just lying on the floor. And I said, Zetty, what happened? And she just laid there. She said Oh I

She sat on the floor on purpose. Tell me.. How was it just got down here. So then I figured it out. She was actually just sitting on the floor. She wasn't falling, she was sitting that you didn't totally freak out in panic? on the floor when I walked in the room.

Well, believe me, I thought about it. Because for a second.. If I had panicked, both of us could not be on the floor. She's already on the floor, depending on me to try and help her get from the floor to somewhere else other than the floor. So I knew I couldnt go into panic mode. I had to think and that's a lot of part of actually being a caregiver. And the situation where there is some mental capacity loss, you have to be the one that comes up with umm.. you have to come up with some kind of an idea of how to get out of a situation that you never ever thought that you would be in.

How do you do that? So you said you like you know you had not had a lot of firsthand one on one experience being a caregiver for somebody with Alzheimer's. You know...you're thrusted into the situation with with Zetty. You don't panic and you come up with a solution. How do you think through stuff to find a solution?

It's kind of hard to explain. For me, I had to.. I have to actually sit down and converse about it. I have to think about, okay, walk myself through it. Okay, this is Zetty, she's on the floor, she's not understanding what I'm saying at the moment. So what I'm going to have to do is step back a little bit, start and try and say it in a different way, you know..to be able to tell you the number of things that I have to say, to get her from the floor. I know that I can't speak very fast. And I know that if Im repetitious with the speaking, she's not going to understand it at that point. So we gone have to wait a few seconds, or a few minutes, or maybe a half an hour, whatever it takes. And sometimes within 20 minutes, or maybe a little longer, I'll come back to the same thing. And ask her to do exactly what I'd asked before, and we up. *laughs* It was... it was the most amazing things. And then sometimes it happens, I don't care how many times I've seen it, or how much how many times I wait alone, I waited, it didn't happen. We had to lay down, I recall the time we had to lay on the floor, put a pillow under her head, and a cover over her. And we just laid there for the longest, longest, longest time. And I think I remember you came home. And then we moved from that point on you were able to help me get herin the bed. But you gotta have some patience. And you got to have a little bit of loving in the heart too. Because you know, this is a situation where you can't get panicky, and if the person is not healed. And I knew if this time she wasn't healed, it was something that we had to get through.

Right. Like you were saying that she wasn't... she didn't have something going on other than Alzheimer's like she...

Right. She wasn't physically ill like she was on the floor and I need to be calling 911, It wasn't that, it was very easy. Just lying on the floor And this is where I want

Right. For some reason... And the thing is, with to be right now. Zetty, we don't ever know, there's no way to know why she chooses to do certain things. You just have to kind of flow with it. But that level of patience made all the difference in the world and you staying calm, and then her not getting agitated, because I also remember you telling me that you figured out if whenever you're calm, she stays calm.

Yeah. Because if you get agitated, and she becomes agitated, you can control yourself. But once she gets agitated, it's already at another level. And then you got to try and get her back down so that you can come up to that point, and then try and get her over the hump. So I just chose never to do that. I always just take my voice all the way back and just go into a different tone, a very quiet smooth tone. And just talk to her. Even though I.. you know, sometimes it works. And sometimes it didnt. But I just have to keep trying different things on that level, just to get her into a phase where she might understand. And she did....eventually.

That's right eventually she did. With Alzheimers, I have found that eventually is the best you can do. If you ever get them there, then count your lucky stars and move forward.

And the rare thing you want to do is to agitate them or to speak in a very loud voice because that's.. that's just like screaming at a deaf person they don't hear you.

That is a very good point like screaming at a deaf person. So I want to back up a little bit DeWanda and I want you to share with us how you came to be a caregiver at all. I remember you telling me that you.. initially the first time you cared for a person on a ongoing basis was your brother.

Yeah, well with my brother it was..it was completely different. I was a caregiver, but I didnt go off that formal name as a caregiver. I just knew that my brother got sick. And it was a physical illness. This, this happened to be a lung cancer situation. And I was the one that was there. And the one who pretty much was the only one. So I knew I had to take care of him. We were very close. And I was working a full time job. So it was difficult. I just did the same thing. I knew that I had to be there for him, take him to his doctor's appointments, try and find out, you know what we need to do to try and get him at least comfortable.

Okay.

For as much as we could do for a person that has stayed for a long time. It was a long process. It took over a year. And actually the doctor said he wouldn't last more than three months but it actually turned out to be a year and it was a full year of me taking care of him not realizing that I was actually a caregiver, or that's what it was called. And I did actually find out about caregivers after I had been involved in it for a while and was able to get a caregiver in because I was working as well. A regular job.

Okay, you didn't realize you were being a caregiver, and then you, you did hire someone to help you out while you were going to your day job, so to speak.

Right. Thats when I realized that they didn't actually have people that wrere caregivers that actually do this type of work and what it entailed. I became a real caregiver. It was a funny thing I hadn't intended..I was retired from the job that I was working in. I was getting bored. So a friend of mine suggested that since Im always taking care of somebody anyway. And it was always in my family mostly or close friends. You know, and the way he said it was.. Oh DeWandwa you like taking care of people. I know my friend work as an administrator. So I thin it was the agency Home Instead t the time. Would you like to j st drive old people around? Lik something,..you know, pick p a prescription, take em out t dinner, whatever it is that they need. I said that sound like fun. I think I'd li

You were really Uber for the old people and didn't know.

That was what I thought I was going to do. I was going to be Ubering and for the old people. Well, once I got the job, and I started working, it didn't turn out that way. I never drove anybody, just hardly for fun.

Oh my goodness.

*laughs* I'm thinking, Okay, when is the fun time that I'm going to be driving? I drove them when I needed to. But I actually became a caregiver because the agency decided, after people requested that I come back, if I, you know, if I went to a job, and I was there for a week or so, then they'd asked if I could come back, I just started to be a real caregiver on a consistent basis. They started calling me when people had come from the hospital had surgery. And maybe they couldn't walk or get around for six or eight weeks. And they needed somebody to you know, to be a caregiver for that particular time. So it evolved from that from never actually riding or ubering anybody around.

Well, that was whatever that whatever you whoever your friend was that suggested that you go and think about driving old people around, I need to send them a bottle of champagne or a bottle or box of chocolates, because they definitely made my life much, much better. So you slid into caregiving, but you stayed with it. So obviously you liked it. What did you like about it? Can you.. Do you know what it was? You thought you were gonna be driving people around and all of a sudden, you're actually in their homes providing substantial professional caregiving services. What was it that you liked?

What I really found out that I liked about it was.. it was just some empathy and compassion that I had working with them, and I wanted to do the work. I wanted to help them so that they could stay in their own home and be there for them when they needed someone.

I remember you speaking of a long time client you had. His name was George and you said that you would like stay for like several days in a row, like work three or four days and then be off three or four days. How did you come to have that position?

Oh that position? Pretty much the same way..it was an assignment. We started out where George was in this very large house near the beach area. His daughter didn't want to put him into any facility and he didn't want to go to a facility. So they had changed and put all his actual living environment was downstairs on the first floor. I had interviewed for the job with his daughter, because she apparently didn't like the services she was getting prior to that. So she interviewed me and I got hired..myself and another caregiver. And George had what they call Lewy body dementia. So he had dementia, but he also had some physical problems with his limb, which means that he would be having problems walking and maybe eventually not be able to walk at all. So he had a lot of......he would fall quite a bit and actually fall.

Was that... was that scary?

That was scary with him yes. Cause he would actually fall and they had marble floor and a couple of times, I actually did have to rush him to the hospital. And, you know, that was just down the hill because he had put a gash in his head a couple of times.

Oh my goodness.

George was ver interesting the entire time I worked for him. I worked four da s on and then three days, y u know, back and forth. H s daughter lived in another stat . So we had to be there in t e house with him 24 hours a da . He couldn't be left alone a d there was nobody else. So it w s just me and George so at leas four days straight daytime an nighttime. He would get up i the middle of the night, run o the door, practically w th nothing on..thinking he was g ing to work.

Oh goodness.

And he lived most of his life and travel. He was always in his briefcase. I don't know if he ever had anything in it, really. But it was always the getting up at four o'clock in the morning, heading for the door, and trying to open it.

How would you get him back in the house or to calm him down? Can you remember anything that you did?

We had the locks moved up first so he couldn't reach it. He wasn't very tall. So he would, I think he would..try to get out the door. And I would always wake up in time to catch him running out and be able to grab him and get him back into the bed. Most of the time having to stay up with him for the rest of the night till about six in the morning.

Until he went back to sleep?

Yeah.

I love the fact that the solution was just move the lock. Sometimes what I have learned in being a caregiver DeWanda is that sometimes the solution is real simple. Don't make it complicated. If he's trying to lead a house, just make it where he can't open the door, just rather than trying to convince him to stay in the house or trying to reason with him. Because a person with dementia no longer has the ability to reason or comprehend what is logical to those of us whose brain is healthy. But if you just make it where the door doesn't open..then Voila! You know..you have to kind of solve the problem without having to upset the client or the patient that much more. So that's cool. That's totally awesome. So now Imma switch back to when you were first starting to work with my mom, and you were so good with her DeWanda that I was able to take my mom on vacation because of you. First of all our willingness to go. But I was able to take her on vaca ion because of you. I wouldn't ave been able to travel. A coup e of times we went down to the Bahamas, you remember t

Oh, yeah. Oh, yeah. I thought that was a great part of the job. *laughs* It was her vacation. But you know, how bad can it be? Being a caregiver sitting up in the Bahamas? Or Jamaica?

That's right. Oh, that's right! We went to Jamaica too write for my god kids. They had a... it was their spring break. And my linesister Kristin Finney-Cook and her family. Her mom was still with us at that time. That's right, we did go down there. But the point is..if I took Zetty then I also took DeWanda. I think everybody knows that.

Yeah, yeah.

Because otherwise, I don't know..I recognize pretty early on that my anxiety level is so high when we're outside of the house, because I can't control the other people or the environment and having you around is like my blanket with Linus and Peanuts. Linus has the blanket that makes him more comfortable. You were my blanket DeWanda. I felt what more comfortable when you were around.

I always tell people when I went on vacation, and we went together, I always said, Well, were a team. When we go together, we have to be a team. If there's something that Janay needs to do, and then she kind of relies on me to do something, something else and then we have to kind of tag team when it comes to Zetty.

That's true. That's true.

Make sure.. because you're right. If you can't control the environment around you, like you do when you're at home, anything can happen. And any change is gonna happen. And people are not always understanding or even try to be understanding. But it worked out.

Yeah, I remember a couple of times talking about people not being too understanding. I remember a couple of times where we took mom to the movies, me and you and Zetty went to the movies. And she would have..you know.. to go to the bathroom and so maybe she had diarrhea or something where it was a large amount of BM right and you were fantastic. You always had that what I call the little Zetty bag with all your supplies and change of underwear and wipes and little bitty trash bags so that we can throw it away but I can remember you coming out of the bathroom sometimes very frustrated and irritated because maybe someone in there was commenting about the smell or saying like Oh my god who is in here? Somebody must be dying ..And you would get so upset about it because while my mom may not have recognized it was her, their tone...They were so loud and their words were so aggressive that it would startle her and agitate her a little bit and I remember you coming out looking like you know you wanted to just cut somebody out. You didn't because you had Zetty with you. But I could see in your face when you had really faced or witnessed some stuff you didn't like.

Because people are not understanding and to me you would have to know that there is a situation where if someone's in the bathroom that long, there is a problem. They're ill or something's going on. Just a little bit of patience. And you don't need to make the comment.

Right. I can remember people like... you might have her in the bathroom even at the doctor's office or something sometimes when we would be just trying to get a urine sample. Goodness gracious getting the urine samples is like an act of Congress out of Zetty sometimes. And they'd be knocking on the door saying they need to use it. And I could hear in your voice and you would say, We're not done!!!! And then I would try to come in and say, Hey, so you probably want to find another bathroom. This.. *laughs* Yeah, this one's not good.

*laughs* This might be a little while.

DeWanda you always remain so freakin calm! I decided that it was because you were from California. I've started telling all my friends. I was like, Listen, I don't know what it is, I think some of that LA and that calmness just has permeated DeWanda's blood and veins and everything and she just stays even tempered. Is there something that you would tell a family member? Right, somebody like me, who is you know, a caregiver, but they've never been trained medically, never worked, you know, with an agency, never worked in the medical field. Are there suggestions that you could make for them. Because obviously, the emotional attachment is different. If it's your mom or your husband or your brother or your sister, there's another level of background and relationship and expectation. What if anything, could you share that might help family members, when they are all of a sudden having to provide care?

Well, actually, you kind of got all these things you found. You kind of tapped into your head and realized it. But I actually do have a friend that's going through it. And I'm actually trying to get her first kind of get her to understand that she has to take care of herself first. Because once she has worn herself down, then her mom can't depend on her. And that's emotionally and physically. And then the second thing I tried, that I'm trying to get through to her is that she can't do everything on her own. You don't have to be the superhero and do everything by yourself. There's actually other information out there if you need to. And there's other ways and people that can help you so that you can kind of get through it so that you know what the next step is without having to remove your parents or your loved one from your home. So its lot of little steps. Patience, support all of that in there. Don't get so upset when they roll in the toilet paper that you gotta snatch it out their hand they're doing it and you've told them not to do it. All of that. I mean, yeah, these are the conversations were on the phone for hours talking about.

Right. You could probably be a caregiver consultant. I know you retired, but you might want to think about it. Because it sounds like you could give a lot of advice. People could call you and it be a 1800 hotline, Call DeWanda. *laughs* What would DeWanda do?

Believe it or not, that's a tiny thing.. the toilet paper thing. But I can tell you now my friend called me one night, we talked for half an hour. She was so grateful that had given her that information. She never listened to me when I told her before about it. No..no its wasted just wasted. Just going through it. I said its just toilet paper.. its toilet paper.

That's right. When it boils down to it is just toilet paper.

Finally, when she realized that it wasn't the worst thing in the world and that it was just something that her mom needed to do. And, and I told her..I said now if you wanna keep it, (she puts keep it in a bucket...she does it differently than Zetty) take it from the bucket and you can still use it because it's not dirty. There's nothing wrong with it. Its just something that she has to do. And I don't know if like she calls it work or whatever she calls it like Zetty calls it... work. But it's something that she seems to want to do and it's not... she's not a first person that does it. I read about a lot of people who have Alzheimers, you know, do that with the toilet paper. Roll it off, Tear it off, whatever.

Patience. Patience is a virtue. Take a step back, take a deep breath. Have a drink of water. Walk out of a room. Yelling, screaming, repeating the same words to a person with Alzheimer's is like screaming Mandarin at me, yawl. I dont speak Mandarin.

Stay nimble. Do not be rigid in your patterns or your plans for any event or for the day. Another Snuggle up: Its just toilet paper!!Listen, people, whatever your loved one with Alzheimer's is doing..If its not going to kill them or make you homeless, Let it be. That's it for now. Thank you for listening. Please subscribe for continuous caregiving tips, tricks, trends and truth. Pretty Pretty please with sugar on top share and review it too. I'm a comedian, Alzheimer's is heavy. But we ain't got to be!