Alzheimer's disease is very mysterious. Caregivers are often guessing what their LO's (loved ones) are feeling, experiencing, etc. CG's live a life of magical charades.
The first time ALZ shows up in an ordinary daily event can turn a caregiver's heart on tilt. J Smiles takes time to share a handful of specific examples of just that. She was not prepared for the initial instance when Zetty did not recognize herself in a photograph.
There are many things that science can track but this is an area where a heart must rely on other humans. Shock and awe create pain and frustration for J Smiles with each first event. She never sees it coming. J hopes her stories can help others navigate the first time, unknowns.
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It was a Sunday morning, we were getting ready for church. Okay, back up caveat, not really, really Morning Morning probably more like midday. We don't do the early morning service in this family. Zetty's Alzheimer's was mild, leaning into moderate. She could still dress herself and do a decent job toileting. I was going to take my shower. I said, "Zetty, wash your face, brush your teeth." She said "okay, baby. I love you, JG." I said "okay, Zetty. Love you too." I leave a comeback. 12,17, 22 minutes later, something like that, don't hang me up. Y'all, water still running, my mom staring into the mirror, toothbrush still in the toothbrush holder, bone dry. No face washed. No tooth brushed. not one single solitary tooth. Whoa, what is happening right now? Parenting Up- caregiving adventures with comedian J Smiles it's 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. Spoiler Alert- I started comedy because this stuff is so heavy, be ready for the jokes. Caregiver newbies, OGs, village members trying to just propup 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:
Today's episode, the first time broke me, but now I didn't know what to do. She was standing there as if we never had the conversation about brushing her teeth. I was paralyzed because we were about to be late for church. And I knew that rushing her was not really a good idea because that could cause a downward spiral of not necessarily her mood, but of her cognitive reference point. I didn't want to rush her. And I didn't want to fuss, but I was agitated, a little bit frustrated, but mostly confused. Like what is happening? Did she forget what we said? Or did she forget what it means to brush your teeth? I'm like, I don't even know what to do right now. So I said, "Zetty, did you brush your teeth?" She says, aha, Did you wash your face? Aha. But when I touch all of the equipment, the toothbrush, the washcloth, everything's dry. We're in some kind of never ending do loop. And I'm like, okay, JG take a deep breath and we have to do these things. I put the toothpaste on the toothbrush, and I begin to brush her teeth. I just say do like this Mama. I open my mouth, hoping she will open hers and it worked. Truthfully, I didn't know what she was going to do. But because I asked her Did you brush your teeth? And she said yes. In that moment. I didn't think telling her Hey, open your mouth or hey, here's the toothbrush. Brush your teeth. I was like, ah, I don't really want to see what that looks like. I'm just going to play mother may I. Like, you look at me and do what I do and that did work. And then I just put the soap on her wash cloth washed her face and yes, we were a few minutes late to church. We're Catholic, we did get there before any of the readings. My mom went to get a manicure pedicure. Every lady wants to have feet and her hand sparkly and shiny, but there's also the medicinal purpose of you don't want to get an ingrown nail. You don't want to bunyan or a corn starting to pitch and poke and prod into an Alzheimer's person's shoe or foot because they can't really tell you what's happening and what's hurting and all of a sudden, they're not walking properly. You don't know is it an ankle, is it a knee, is a gout, is it diabetes starting to come up in their calf muscle or is it just a bunyan because you should have got that scraped off or something. So anyway,Zetty goes, this again is doing the earlier, not quite moderate, more like mild lenient to moderate, so the caregiver took her. Y'all Zetty still had her credit card. I did not remember that she had her credit card. When they asked who was going to pay for it, this caregiver was fairly new on the team and Zetty said, I got it. She pulled it out her wallet, she paid for it. She tipped the people $100, now mind you she didn't get nothing fancy. Okay, this wasn't gel tips with diamond encrusted cuticles. All right, this wasn't nothing fancy. She wasn't red carpet ready. This was probably a $17 manicure with a $23 pedicure. So much so that the owner called me to say, "hello J Smiles. Please just stop out here whenever you get back in town and pay us cash. We are tearing up this receipt, your mama didn't mean to do this. this cannot be right." They say the Lord looks out for babies and fools. I'd like to say babies and fools and Zetty it was cute and it was funny, but it also hurt because my mother is a CPA and numbers, that's her thing. She always got the money, right, what she was most noted for. She did not ever over tip. She wasn't one of those people that said I'm gonna just leave $1,000 for the people at the drive thru. She gave you your 10 to 15% or 20% to 5% whatever was the market rate period, if we were in another country and the market rate was 2%, she did the 2%. Y'all feel what I'm saying? So I was like, oh, what is happening right now. My mom loves sports. The year that Derek Jeter was retiring, she was still able to identify the athletes that she appreciated the most. She could pretty much say their first names like she would say that's my guy, that's Derek or that's my girl, that's Serena. She saw a ESPN commercial that Derek was retiring and she looked at me and she said, "JG we got to go see Derek and tell him how much we appreciated him." And I was like, Yeah, that Y'all, Zetty walks up to him with her hands in the air like a sounds good. Y'all. I thought it would go away, it did not go away. Every time this crazy commercial came on, she said "JG we got to go see him and tell him how much he means to us and how much we've appreciated everything he's done for the sport." Okay, Mama, she said, but we love him and he means so much to us. And I'm like, "yeah, everybody loves him. He means so much to everybody. Like everybody is trying to tell Derek Jeter bye. Are you kidding me?" Y'all, then she got me. She rubs my back and my shoulder and says, you can figure it out. Uh, like the biggest best dare ever. So what happens? I do figure it out. I called some of my connects, which typically starts with my Howard family. One of them made it happen, one of my delta baby sorrors, my spesh, made it happen. I get my mom to this private event. We meet Derek Jeter. They tell us kid does Santa Claus. She's like, hey Derek, hands in the stand in line you can take a photo do not touch Derek. Just stand on the dot, don't touch him.I say okay, cool. I stand beside him. air for the big hug. Derek walks right up to her bear squeezes her. I'm like, oh my god. We're gonna get kicked out of the event before it starts, They are having a love affair, they are kissing. It is lipstick on Derek's face, we got the wipe it up before the photo op. I'm like this clown here. I'm like, did you get his number? Is there as a party? What's going on Zetty? Okay, anyway, we get home of course I get the blow up photo. We get the photo. I put it in her room, it's Zetty, Derek, JG. She looks at me, she says "JG Why didn't you take me?" And I say What, that's me. That's you. That's Derek. She said "Yeah, I see, but I didn't get to go." Y'all I'm like, whoa, okay. So we're looking at a photograph, she tells me that she sees herself. She's acknowledging that that's Derek Jeter and that that's me, but her feelings are hurt that I didn't take her to the event. What the hell am I supposed to do with that comment? As if that wasn't enough for my poor little heart. The only full whole human being that my mama will fight, and cuss and go to blows over more than me is Dr. Martin Luther King, Jr, period. It goes God in all forms, Martin Luther King, JG, everybody else. There was a photo of Martin Luther King, Jr, abig old photo color photo. It was a picture book of a bunch of photos of Dr. King, speeches, y oung Dr. King, and then a little bit older Dr. King, obviously he didn't live very long. She looked at me and she said "He's attractive JG, Who is that?" Whew....I say who, who, who,who, ummm, who is who, who, who, who is who? I'm ,listen ahh, I'm trying to pull it together. I'm pointing at people in the crowd, you know in Dr. King picture book is other people. I'm like, Who? Who is Who is that? I'm pulling it Ralph Abernathy. I'm pointing at Mrs. Coretta Scott King. I'm pointing at the tree, the fire hydrant. I'm pointing at Bill Khana. I'm pointing at anybody, I'm trying to catch my breath because if she doesn't know Dr. King, Houston, we have a problem it's over. We could just go ahead and cut the lights out. There was literally a lump in my throat. There was such innocence in her voice. She drew no connection to his face, to the scenery, to the words of I have a dream, nothing. My mama lived that with that man. She has lived her entire life, according to his principles of the non violent movement. I ain't know where to put it. I had to take the book and say its time to do, hold on Mama, let's see what's on TV, get something to drink and what? Absolutely, tears, tears, all tears. Whenever she's a little anxious or in pain, nervous, I will suggest that we pray especially the Hail Mary, we're Catholic, that's a soothing prayer for my mom, it always has been. My mother loves to pray. She leads the Hail Mary, that's what she's done in the family at church all the time. All you have to say is Hail Mary, Say hail and she comes with grace, full of grace, and she can take it right on home baby. Do you hear me? She could be right there with the Pope. celeb bla for celeb bla baby. That first time I say hell and she didn't come back with Hail Mary, I was staring at her like hello I wanted to knock on her forehead and say is anybody in there? Because if you are awake and talking, and you know I'm JG but you can't finish Hail Mary, Im confused. I ain't know what to do. Now is one thing if you look if you toss the peter out toward the end of the prayer, I say hail and you don't come out with Hail Mary, I mean that's the football term. They thought they just chucked the ball as far as they can down toward the endzone is called a hail mary, we just gonna toss it up there and hope it ended up all right. Ooooo whew, you talking about some I was like mmhmm, now we don't know Derek Jeter, okay whatever he's athlete , but we dont know Dr. King by the face and reading. I have a dream doesn't raise our heartbeat or give us goosebumps, okay, okay, I'm digesting this. But now JG says "Hey Zetty let's say the Hail Mary so that we can have peace and protection." She smiles says okay, but can't even get out the first three words. Alzheimer's let me tell you something, meet me outside. MEET ME OUTSIDE. My mom started gambling legally when I was a little girl. She actually went to a conference for work in Las Vegas. She fell in love with roulette. She thought it was classy and pretty. Everyone had a chair. She thought the wheel was pretty roulette relay is French, my grandmother is creo, you can imagine the rest. The layout of the board was cute to her and there were a lot of different statistical choices of what, how you could bet, and you got to put your chips down, those are the things she preferred. When she could still travel fairly comfortably, we would go to the Bahamas, her Alzheimer's was moderate at this time, but the early stages of moderate, I said, Imma take herin the casino. We went in the afternoon, very few people in the casino, not a lot of noise, really no smoking, there was only one person at the roulette table, I thought it would be a great idea. I had the chips, for those of you who may not play roulette, basically, you get like $1 chips that look like the size of a US coin dollar, the numbers go from one to 36. Imagine it being a checkerboard, but put numbers number one in red and number two would be black and number three would be red and so spread that out alternating colors from one to 36. And then you just come up and you place your coin on the number, they spin the ball on the wheel and then you just wait and see. My mom stood there with her chips. It was just the two of us standing. I said, Well, Mom, what do you want to play? And she said, I don't know. And I said, Well, what number do you like? And she said, I don't know. And I said, well, what's your favorite number? She said, I don't know. I said, well look at the numbers on the table, pick one. She said, Okay. And I said, What do you want me to pick one for you? And she said, No, that's okay. And I said, Do you want to just go back to the room? She said, yeah. Now, oui we, JG and Zetty at the roulette table with chips. I need y'all to know, my mama taught me how to gamble. I was 19 the first time my mama taught me the roulette table. That's what we do together. She gets like, I think she would get Bailey's over ice andshe thought she was doing something. A shot of Bailey's over double ice, okay, with a straw, she's so cute. I would get a coke, but she couldn't select a number. She couldn't point to a number. She didn't want me to pick a number, even in a slow casino, with no one else at the table. That's how fast things shifted. I didn't know what to do. Internally, I didn't know what to do. Externally, I knew I wanted to put take these chips to this here cashier, get my hundred dollars back and go to the room. Those first time things that stign and hurt, first time you turn that corner that Mack truck smacks you, you're like, whoa, wait. What? There's something to be said for the second time. The second time your loved one can't swallow a pill or the second time your loved one can't clean herself after toileting or the second time your loved one doesn't remember what day it is. But that first time, sure. That first time the disease presents itself in a particular way where they don't remember their name or their age, where they live, how many siblings they have, if their parents are dead. If they remember your name, if they know how old they are, they know what country it is, if they recognize themselves in a picture, the first time any of those events or experiences happen oh, for me, gut wrenching. Ahhh, all I can say is I'm still standing, I'm still standing and you will too. The snuggle up- Number one, a lot of not so cool, oh shit did that just happen things will occur. Don't overreact. That's the best you can do as a caregiver, is in the moment don't overreact. just pause. If nothing else, just shut up, be quiet, don't talk. Just take five seconds, three seconds, two seconds, eight seconds, whatever amount you can steal from reality to hush, breath, pull it together, pause. Number two, release expectations of what your loved one did in the past. Thoughts around, he never did that before, she would have never done that, what in the world is going on? Well, your loved one didn't have Alzheimers before. He or she doesn't realize what's happening right now. It's not going to help either of you to thrust some version of your confusion on to your loved one who has the disease. Number three, if you enjoy this podcast, if you've gotten one single tidbit of help or support, please share t ,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 yo , chat with you, hear y ur questions, and your comm nts about caregiving. Also sig up for our Parenting Up email l st, both have details in the how notes. That's it for now. T ank you for listening. Pl ase subscribe for contin ous caregiving tips, tricks, tr nds, and truth. Pretty Pretty lease with sugar on top, sh re and review it too. I'm a c median Alzheimer's is heavy, bu we ain't