Zetty throws J Smiles off with a request for a cell phone. What seems like a simple ask turns into a quest for the holy grail. For Zetty, J soon realizes it is a dignity issue too.
J Smiles takes listeners on a rollercoaster journey of communication product assessments. She points out design features created to improve the lives of seniors. Question is does J agree. Will any of the items help a dementia/ALZ sufferer like Zetty?
J Smiles leans into her product design and engineering expertise to dive deep into the market --- putting Zetty first, she finds a solution in the oddest place.
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When Zetty's Alzheimers was mild, her sense of time was pretty accurate. She needed to communicate with me every day, multiple times. She wanted to see me, preferably, but at least talk to me. If I was out of town, it would get tricky. The caregivers went out of their way to respect my schedule. Actually, they went out of their way, a little bit too much. A couple of them, I had to go round and round with them saying, "Hey, listen, if my mom wants to talk to me, or if she asked me where I am, or Hey, have you seen JG?" If she says that three or four times in one hour, ust call me or text me? Don't you decide that I'm somewhere too busy because I'm in New Zealand, or Cape Town. You just try and if I am too busy, I will tell you so or I just won't to answer. You guys, hat was significant hurdles. Anyway, we got through that. I would talk to Zetty assure her I was okay. We have great conversations. I told a bunch of lies, that I will be home in a couple of hours and I would kiss her goodnight. That worked very well until it didn't. I got home from a trip, y'all I walked into Zetty's room I said "hey, mama." She said "Janay Mariel!" I said ooohh, now I won't lie a part of me was so excited that she remembered my government name, but then the other part of me remembered that as a child, when my first and middle name were said simultaneously, that was bad news. So in the moment, I was in a knot. So she said "Janay Mariel!" I say "Oh, Lord, what just happened?" I say "Yes mama?" Where have you been? I haven't talked to you. I haven't seen you in a year. Y'all, it had been approximately six days, but in her Alzheimer's world, it had been a year, so I let her have it. I said, Well, Mama, I apologize. I didn't know you wanted to talk to me. Why didn't you call me? Well, I didn't have a way to call you. And I said, Well, why didn't you ask? There's a phone here. You could have asked anyone here to call me, they would have called right away. She put both of our hands on her hips and I gotta tell you, I have a black mama from the deep south in the United States. If both hands go on the hips, you, you're in hot water. So her next words, huh, yeah, so both hands on the hips and she says, I am your mother. How do you think I feel asking someone else to call my child. I need my own phone! Parenting Up- caregiving adventures with comedian J Smiles, is the intense journey of unexpectedly being fully responsible for the well being of my mama 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. Spoiler alert- I started comedy this stuff is so heavy, be ready for the joke. Caregiver newbies, OGs, village members trying to just prop up a caregiver, you are in the right place.Zetty:
Hi, this is Zetty. I hope you enjoy my daughter's podcast. Is that okay?J Smiles:
Hey, Parenting Up Family. I took about a 10 day breather, hrilled to be back. Thank you for your patience. Today's episode.Uh oh, Zetty wants a smartphone. Parenting up family, I must admit I was not ready for that response. She threw me completely off guard. The clarity was outstanding. I felt like a middle school JG that neglected to do the dishes and maybe didn't turn in some homework. I was like, Oh, I gotta fix it. And I snapped out and I was like, Hey, wait a minute I'm in charge here, right? I'm thinking I can do this. I got her to see Derek Jeter for crying out loud even though she can't remember it. You all heard about that in episode 22. I'm a technology person. I'm an engineer, and I like gadgets. My mom wants a phone, I should be able to do that. Technology is garbage for dementia and Alzheimer's, that's my take on it. If anybody has a different opinion, I would love to hear about it, please send me some other vantage point. But what I found is for dementia people, technology has not ever considered that category of clientele. Yeah, technology has thought about old people and echnology has thought about ndividuals who are physically nfirmed. Arthritis, absolutely. oor vision, yep. Limited trength, or perhaps just low ech IQ, I found a ton of stuff hat would fit in those ategories. But I was like, eah, that that had nothing to o with my mama. I was xperiencing deja vu, just like n Episode 14, parenting up ontrols to what I talked about. hy can't caregivers have arenting controls of radio or elevision, to make sure that heir loved ones aren't scarred, nd negatively affected by rogramming or music and things ike that? That's how I felt bout this technology with elephones, like, are you idding me? We have this elephone, they'll just say ommunication devices because etty said she wanted a phone nd she was just kind of looking t my iPhone. But I know what it oiled down to it, if I showed er a landline, that would work hat would have been fine. She anted to be able to talk to JG nd have control over it. She id not like the amount of ependence that she was being orced into. She was still clear nough to realize, hey, I aven't seen my child, I haven't alked to my child, and right ow dagnabbit I want to talk to er right now. And who is this erson standing between me and y childoh hello no and so t ere was a dignity component to i . Therefore, the gadgets and t e technology that's around c mmunicating for an elderly p rson trying to talk to say, g andkids, kids, or maybe d ctors or somebody that they're t ying to communicate with y'all s much of that stuff is like a chaic, and not at all slick a d cool. I wouldn't want to use i , that's the first thing I'm l ke, this is not cute, is b lky, is cumbersome. Like who th hell made this, not to mention they are so isolated in th issue that they're attempting t solve. They've decided that, oh this is great for granddaddy t talk to his grandkids an therefore, they just made th speaker really big and loud Well now you can't just market that as for grandpa talking t the grandkids because now yo 're just assuming that grandp s only issue is hearing loss. Y u should mark it that as for t e hearing impaired, becau e somebody who was 27 years o d could be hearing impaired h s nothing to do with bei g grandpa, you know what I m saying? And then I just start d getting infuriated. I was lik , What in the hell? Listen, e're better than this. So no the lawyer, in me the p oduct designer in me, the caregi er in me, everything is boiling ver, we're melting. It was a me And they're slick things like tablets. Listen, for somebody with dementia, you just gonna give them a uniform touch patch screen. They didn't grow up with that. Touch What? How do you even turn the thing on? Who's going to help them operate it? Remember Zetty's issue was she wanted to call me on her own terms on her own time. I encourage all caregivers to really listen with your heart to what your loved one is saying and not jump to conclusions on fixing the problem with the first item you can buy from Target or Best Buy or on Amazon. Because for my mom, the biggest thing was independence, I heard that mostly with her body language, with those hands on the hip, and the look in her face, you gone have me ask somebody to call my child with the head moving left to right, y'all know what I'm talking about? I was like, Oh shit, well, this can not be the case. I knew an iPad, or any kind of tablet wouldn't work because she's gonna have to get the assistance of one of the caregivers to turn it on. There's no clear power button on a tablet. You can't talk to the tablet and just say, hey, turn on. But a person with dementia don't even remember to say turn on all the time and there's no button that says on. And there's nothing that says, press this to make a phone call. It is not intuitive at all. I was like, Oh my goodness, what am I going to do? And landlines don't work because you got to remember too many numbers, way too many numbers. And what if I'm out of the country, country codes much too much. And then again, she's going to have to ask for the assistance of one of the caregivers, that is out. The handy dandy flip phone, which is what many seniors prefer and that's mainly because you know that it's turned off when you close it. The flip phone is like a clamshell, when you open it up, you can make a call when you close it, it's off. I get it. However, it is not intuitive if you have cognitive decline. Which numbers are you supposed to press? Or shall I say what buttons are you supposed to press when you want to start the call? Just because it's a green receiver and a red receiver that doesn't tell an Alzheimer's person that that means start the call and red means in the call if they are in a stable enough place to remember the numbers. Those phones were not made for anyone with cognitive decline. And I'm just getting more and more upset when I think about it because I'm like, wow, in this stage, my mother, her decline was still fairly mild, mild enough for her to be able to cuss me out very smoothly I might add. If one more person suggested the jitterbug to me, I thought I was going to pull all my hair out. I continue to say my mother has Alzheimer's, they say yeah here's this great phone for seniors called the jitterbug. I cannot wait for those of you who don't know about the jitterbug to go look it up. It is basically just a larger big, fat number pad, larger screen, cell phone. You know, it's like the big jumbo crayons for kids in a cell phone. What in the hell does that have to do to help a person that has declined in their mentals? Ugg, when people don't listen to what I'm saying. For any of you who have attended a J Smiles Comedy set, or seen any of my material on the internet, you probably heard me do a bit or at least reference that I don't really, I don't dig how American society fons over young kids and we kind of throw our elderly away. Not everybody, not everybody, but there are other cultures, particularly Europe, Africa, South America, you know, actually, pretty much every damn where, they really elevate their elders, much more so than we do. A lot of other countries don't even have all this assisted living in nursing homes and all these different options of where you can live out your later years. Anywho y'all guess where I ended up finding my best options for Zetty to communicate with me? Go ahead. I'm gonna give y'all a second. Right, for the kids. Now, this part of the story is kind of good. So I was on the vineyard one year in August, which, if you are black, and American, and you go to Martha's Vineyard, which is an island that belongs to the state of Massachusetts, it sits in the Atlantic Ocean that is primetime for blacks to hit the island, it's beautiful. When I say is beautiful, I mean, it's a beautiful experience. You can look it up. It's very historic and it is a lot of as my grandmother would have said, hobnobbing and networking, socializing. It's a very, it's almost like a perfect Mayberry, sweetheart, strangers become immediate friends. Nobody locks their doors. It's, it's, it's extreme. It's like, what was a movie with Jim Carrey was in, The Truman Show. It's like imagine The Truman Show with a bunch of black people who actually probably don't really know each other, we all just descend upon Martha's Vineyard. Nobody really lives there. We just take over in August. So anyway, I was there and I met this guy, he was very attractive, I digress. Imma get back on point because we were talking about Alzheimer's and Zetty and her trying to communicate with me. And we meet dancing at the Allen house, which is like one of the few places where you can consistently dance in the evening to some DJ band type vibe or Dalai Lola's anyway, again, I digress. I meet this guy, as we're talking and getting to know each other, and he was fine. I'm having a problem staying on topic, he was really, really attractive. So we start talking about potentially staying in touch, once we get back on the mainland, and as we're sharing about our lives, he tells me that he has custody over his children. And I was like great, that's awesome. I was like, Well, I have custody over my mom and it's might be a lot of the same. So we're just talking through what that responsibility is like and then he looks down at his phone, and he's monitoring his children and he's sending a text, and they're responding. And he's looking down and he's talking to his phone and they're talking back I said, Oh, they have cell phones. He's like, Oh, no, never, they're too young and they like nine and 11. I was like, Well, how are they doing? And he said, from their watch, and I said, Wow, do they have like, you know, the Apple Watch or the Samsung watch? He said no, it's a Gizmo. I was like what is a Gizmo? Basically, it's a GPS watch. The market created, what I'm going to call the dumbed down version of a smartwatch. So it's not as fancy as the Fitbit type watches that adults wear. You can only program maybe five numbers, maybe eight numbers, a child can talk to the watch, and call out mom, dad, babysitter, teacher, police. But whatever name they call out, that person gets called and that's it. There's no internet, there's no way for them to actually text with their thumbs. They can only talk and you can always tell where they are. Guess what Parenting Up family, before I left the vineyard, I sho did go online and order my mama a hot pink one because they only had black and high peak. Her favorite color is fuchsia that was as close as I could get and my mama loved it. I only programmed in my name, so whatever she said call if she just she said call God, call Joc- that's my dad, call JG if she said the word call it was gone call me. Hey, let me tell you the elation in her voice when she would put that watch on and just say call and it called my cell phone and we talked as long as she wanted to talk anywhere I was in the world, I could talk to my mama from that watch. Now the awesome thing is that I found a solution that really could fit our needs. What pissed me off though was I had to go buy her some kid stuff which gets me back to the idea of we got To do better as a society on Alzheimer's awareness, on the needs of adults suffering with this disease, on what caregivers need in order to love on our family members, our family, our friends. It's ridiculous that look how random that is as hard as I was searching and looking, it was me dude meeting that dude on the venue that the Allen house. Anyway, the universe does rise up to meet you where you are and I'm very grateful for that. But I knew I couldn't just go buy my mom like a real, a real smart phone or a real smart watch. Y'all seriously, my mom used to be nice with the Blackberry, and all the little smartphones before the disease took over her mind. I could just see my mom ordering a car. You know what I mean, off the internet, or messing around and ordering a baby from China. I was like listen, this lady is slick. Y'all remember I told you how she done talked the caregiver into taking her or trying to take her to a meeting that she had with the judge. Yep, that was an episode 16 those zany Zetty stories. I didn't know what she might come up with if I gave her access to cell phone technology, or something with the internet. I couldn't take a chance of what she might purchase, or who she may talk to, or who may end up finding her. That's, you know, cat fishing, fishing, get out of here, psssh. The irony is obviously, Zetty still needed assistance with the watch. Somebody had to plug it in every night to make sure the battery was charged, but she has great caregivers. They would always do it while she was asleep, so she didn't know that they were helping. And in the morning, they would unplug it, put it close to her on the nightstand and she knew what it was. So if she said Hey, where's JG? Have you seen JG? And they would say, Well, she's at a meeting, but if you want to call her, here you go and they would just hand out a watch. And she said, Oh yeah, that's right and then she would pick it up, y'all it was so cute sometimes she would tap it first, because it would light up and make a few dinging noises. And she'd say, called JG or call Angel. It didn't matter what she said, but it called me. And I also cannot tell you the elation I would have when my phone rang because it would say mama calling. And in those brief moments, it felt like I was stealing a moment from the past. My mother was calling me from her very own communication device. I was on three different continents that I can recall getting a message from Zetty, all over the United States. It was awesome when I talked to her live, but actually it was even better when she left a message. Because I still have those to this day saved, her voice, her sweet, sweet voice, leaving me a message. The snuggle up- Number one, listen past the heat of anger, or frustration or confusion in your loved one, even listen past the words. If they're making a request for a different food, or different shoes, or clothing, they don't like something, they want something different, Just pause for a second, read their body language, their facial expression and before you put as much effort as you can, to grass, the crux of the issue, the simple answer, or what appears to be the quickest answer may not be your best long term solution. Number two, there's always information floating in the universe to help you solve a problem or get past a tough spot with your loved one. Be open to conversations and gaining knowledge and information from individuals and sources not related to dementia. Just like when I got that awesome answer about the gizmo from the dude who's a dad just trying to make sure of where his children are. He really just got it as a GPS watch. I didn't need the GPS function. I knew exactly where Zetty was all the time. But it was a perfect solution for each of us. Number three, if you enjoy this podcast, if you've gotten one single tidbit of help, or support, please share it, spread the word. Click on it, send the link to someone it will help. You are my marketing budget. Yep. Thank you. Number four, join us every Monday night for our live streaming show on getvokal.com 9pm eastern standard time in the United States. Cannot wait to see you, chat with you, hear your questions, and your comments about caregiving. Also sign up for our Parenting Up email list. Both have details in the show notes. 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