Choices and options are celebrated all over the world. Everyday we are encouraged to expand more, try more, do more. We are trained to avoid boredom at all cost. And definitely never become too bland or predictable.
J Smiles asks the listener to trash this thinking. Alzheimer's created a need for patterns, repetition and routines in her mom's life. J treads lightly putting variety in Zetty's day. Smiles uses quirky yet truthful stories of when too much variety bit her in the butt. The overarching message of the episode is to stick to strategies that give the best care with the least amount of stress to the caregiver.
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Groundhog Day (movie)
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We had several awesome weeks Zetty mental clarity was stable. I had the bright idea I'm going to take her to the movie theater of course. I picked a matinee, I timed breakfast, a light lunch, give it a little bit of time empty her bladder and her bowls, we head off. Boom it's gonna be awesome. We get to the movie theater went there, they turned down the lights. Ya'' it gets dark, do you know how dark it gets in a movie theater? I didn't realize how dark it really gets until I was in this movie theater with my Alzheimer's Mama. I was like, uh oh, then the people beside us start fidgeting cell phone lights are popping up as soon as the light comes on Zetty is turning "JG What is that?" She is not using her inside voice and I'm like mom shhh, you're not suppose to. Okay, can you not talk? Oh ok, am I suppose to talk? Not supposed to talk JG? No, mama, we gonna just watch the movie. Okay. We just watched the movie. The man in front of us gets up to go somewhere. I don't know if he's going to vote, if he's flying to Mars, he's going to the concession stand; either way he gets up excuse me, excuse me, excuse me, excuse me. And so as Zetty is watching him and she's like, Who is that? JG who is that? I'm like, Mom, I don't know him, but we're not supposed to talk suppose to watch the movie. Okay. Okay, not suppose to talk suppose to watch the movie, whew. Somebody behind us is smacking. Somebody else is chatting. I'm trying to tell my mama to not make noise but everyone around us is making noise. You see the conflict as the movie continues Zetty starts to have an affinity for particular characters. Now my momma is a child of the civil rights movement, a personal student of Dr. Martin Luther King Jr. She does not have a problem being vocal and picking sides. So as the movie progressed, Zetty is cheering and clapping for the person that she likes, even when it is total silence in the theater. So I'm like, Zetty we're not supposed to be talking right now shh. Zetty, by the third time she's doing this mom. Wait, please don't Okay, Mama. Don't Don't talk to the movie. Don't Don't talk. Don't talk you disturbing people. Don't listen. Ma please don't talk you disturbing the people. Y'all, she turned to me, she said "I'm not talking to them. I'm talking to you." Uh oh. 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 the 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:
Hi, this is Zetty. I hope you enjoy my daughter's podcast. Is that okay?J Smiles:
Today's episode, variety is not the spice of life. I left that theater thinking somebody owed somebody some money either collectively, I needed to pay the other movie goers for putting up with my mama's outburst or they all needed to pay me in Bailey's for my coffee for me having to manage my mama for all the fidgeting and noisemaking they were doing. Now the person who did not seem to be really fazed so much was my mama cuz she kept it pushing. Do you hear me that baby kept on talking all she wanted to? I carried the anxiety around what disturbance she was creating publicly for the others. But what I did learn that day was pound for pound my mom didn't have an added value in the experience of watching that movie in that theater versus watching a movie in the comfort of her home in her familiar environment where she could talk as loud as she wants whenever she wanted to asking me whatever question she chose. And I was like, Huh, so paying for the ticket, determining traffic patterns, the anxiety that I went through around will she have to go to the bathroom 12 times, will we be sitting by people who are understanding and caring, will this movie startled her, will she followed the plotline; it's not like I could just change the channel like I can at home. I was like this wasn't really worth it. I don't see that she got anything out of it worth the potential risk that I took. I had to check myself. That was another part of me coming to grips with this denial that I continually struggle with to this day. Moments of am I doing a good job as a caregiver, am I caring for her in a way that's complete loving and nurturing, but so many times I'm looking at my mother through the eyes of who she used to be and who I would prefer her to be. Soright, I want my healthy mother to say "JG get me out of his darn house. I done been in this room for 17 days straight. I'm sick of being on this couch. And I'm sick of watching Family Feud," that's what I want her to say. But actually, guys, she's okay with it. I have to recall that moment in the movie theater, it wasn't actually in the movie theater it was on the drive home and later that evening, where I had the Epiphany, the ah ha, trying to add this variety to her entertainment viewing experience. That was all me that was ego, or hell, maybe it was just me needing to get out the house like okay, I don't want to watch another movie on the couch. It might have just been that. Now, let me pause for a moment and be very clear that it does depend on what stage of Alzheimer's your ello, your loved one is currently in as to whether this works in my opinion. Now remember, I don't have any medical degrees or training, I am coming from a place of experiential caregiving. I have almost nine years with my mom, where I've been in the trenches as her primary full time caregiver. And then with my grandfather, my maternal grandfather, my mom's Dad, I was a part of his care team for five years. According to alz.org, which is the Alzheimer's Association within the United States. It's our primary nonprofit Alzheimer's research organization. They're the leading authority on it thus far, there are really three stages of Alzheimer's, mild, moderate, and severe. My mother is currently in severe if your loved one is mild, meaning they were recently diagnosed, they still live fairly independently, meaning they have control over their bladder and bowels, they are cleaning themselves, getting dressed for themselves, they can still form full sentences, they can still give preferences on what they want to eat orif they would like to wear blue jeans or jogging pants, then choosing variety for them may actually have value in purpose. There's no single one size glove fits all in this, as I'm sure you know, you're a caregiver or supporting a caregiver. That's the one thing about it every day and every minute you are scrambling to figure out what's best in the moment. One of my caregiver mentors owned a caregiver agency and she used to laugh and say all the time, J Smiles if you've ever met one Alzheimer's patient, then that means you just met that one patient because you can't use that one patient and their stages to then take that to mean that you understand what another Alzheimer's sufferer will do or how they will behave. If your loved one is in stages two or three meaning moderate or severe, then I really believe that this will be of great value for you. I know that it was very helpful for me when I drank the kool aid, and went ahead and snuggled up to the idea that adding a bunch of variety to Zetty's outings or schedule or her food or her clothes, or her hairstyle or her visitors wasn't even necessary. It was not going to add enough spark or smile to her life for what it would take out of me to plan it. Now, you all have likely realized that my brain loves to absorb information and try to figure things out. Which is why being a mechanical engineer, a product designer and a lawyer all fit me very well. I actually enjoyed going to college three times. I enjoyed going to class. I didn't like eight o'clock classes. I've never liked class before 11am at any point in my life, but I actually love learning. I have an insatiable appetite for information, accurate information. Okay, accurate information. I had to figure out why I had such a bee in my bonnet about this variety. Why did I care so much and so anyway, at least for me what I kind of pulled apart in the story that I told myself that sounded good that I'm choosing to share with you I kind of broke it down into two ways of this is how I was managing my mom's needs. In one way. It felt loving and rational to keep familiar routine and same same same kind of things in her life- her bedroom, the chair where she sits to eat her bathroom, her favorite sneakers where she goes on the treadmill, the caregivers. Let me pause right here, let me say this out, there'll be other episodes where I really get into how I choose caregivers, anyone, not myself, even if it is a person who is doing it for free is just gonna hang out with my mom for a few hours. Just because you're a family member or a dear friend doesn't mean I will allow you to sit with my mother if I'm not around. You have to have a certain temperament, certain personality to be with my mother. That's just how I roll period end of story. Anyway, that made sense, right? That type of routine and sameness felt like I was being loving and protective, that type of familiarness if that's the word- where her toothbrush is, where the soap is, the toilet that she's going to use in the house, her house shoes where they are in relation to her bed, her rosary beads we're Catholic. Where is her rosary, her eyeglasses? Where are they when she wakes up in the morning or the afternoon? Okay, my mom does not wake up in the morning. It's nothing to do with Sundowners. I can promise you that that baby. She has always been a night owl. She is currently a night owl. I cannot tell you how many agencies and caregivers I have fired with a big old Fwhen they tried to say well, we got to get her on a better schedule ahhh uhhh, better schedule uhh say who what's wrong with the current schedule, that's what I got for you. (womp,womp sound) Her schedule is just fine, she ain't got no where to go, she don't have nothing to do in the morning, waking up at 8am and going to bed at 8pm does not change anything about that baby's life. She gonna wake up at 1pm and go to bed at 4am like she wanna. Okay. Seriously, though, that felt responsible making sure that her environment, the daily routine was stable and familiar to her. I read about it. The medical world suggested that I keep it that way for anyone who has Alzheimer's or dementia related disease. Great, but then when it came to eating the same food or having the same outings and entertainment experiences, reading materials, when it came to the same aerobic exercises like weightlifting exercises, that stuff being the same, or listening to the same songs that felt like I was being lazy y'all. Real talk- I felt like Jason house you can't just have a listen to the same three Aretha Franklin song that you just you tripping you got to do better than this. Like okay, are we gonna do, got do puzzles and now we got to do painting. And then we got to come up with macro may and maybe walking into the pool at the health club and get her a tablet with an app that has all of these mind memory, almost kind of like Simon says games, you got to give a variety you got to spice it up. Come on, think of something. My absolute favorite professor at Howard University, the late great Dr. Alexander Gardner would say kiss keep it simple stupid. Now a sweeter way to say it is keep it simple, sweetie. That's what I do now, without putting that much pressure on myself to give that level of variety, especially since it actually is not benefiting my mother and I have two sets of evidence. First is what I started this episode with is a simple example of what happened at the movies. And there are hundreds of other examples like that with my mom where I gave this variety but by her physical response, her facial expressions, the lack of memory she had like 10 minutes later, let me know this didn't add value to her life. The other things that her neurologist have continued to tell me Alzheimer sufferers don't really learn J Smiles. What I'm currently speaking on is prevailing thoughts on Alzheimer's by the medical system in the United States. Alzheimers sufferers cannot learn the brain cannot retain anything. It can't relish in the freshness of stuff that is new. The movie Groundhog Day with Bill Murray, that same day just kept happening over and over and over for him. Now he knew that he was experiencing that same day over and over and over, but everybody else in the movie, it was happening new for them. If you haven't watched that movie, I encourage you maybe to watch at least half of it. It's a comedy, I think it's hilarious. Bill Murray, to me is one of the great comics of all times. The way I look at it is I'm Bill Murray, Iknow that this day, this moment this conversation has happened already. To me my mama Zetty is all about The characters in the movie to her it is happening fresh every single time. In groundhog day, that day repeats 35 or 40 times for Bill Murray and identical day, a quadruple times 10 day. It is really, really something to see. That's kind of how I move with it now. J Smiles what do you do then? With music through trial and error and loads of locked in observation, the songs that my mom responds to with the most body movement with the happiest facial expressions and with the most singing, I will put them mugs on repeat three or four times in a row. Y'all she sings louder and happier each time because by the third time I'm playing the song, she remembers more of the words. It's kind of like the dust got knocked off. She might just be remembering them from 30 seconds ago where she just saying it, you know, I'm saying. And for her shoes, I know they're comfortable by the way she walks, is she limping at all, is she walking slower, or does she start to grimace and wince then she don't like those shoes. Are their shoes that I noticed that she puts on herself a little more quickly, does she tie them, does she pop them on using her foot in her heeled foot heel toe thing on her own allowing a little more independence? I'm getting those bad boys in blue and tan and brown in two blacks for good measure. My mama loves a poppin red and a vibrant orange. She hates her arms out period end of story. She likes a V neck cut. She's not too crazy about a collar, her hair gets tangled up. She prefers her hair around shoulder length. That's it. I will buy that same red if it fits her well. She's a little heavy in the booty area. Okay, if it fits her well, I am getting that red five of them. I'm getting that orange five of them. When I first started this caregiving thing, I was trying to get five and six different styles of shirts in 12 different colors with a crewneck and a V neck and a collar and a crop collar, huh why? When she puts on the red, she doesn't ever say I had this on yesterday. She says Oh, I like this color, that's if she's having a good day. If she's having a bad day, she doesn't say anything. We just put the shirt on and she sits down. Good day- Ooh, I like this color. Bad Day- No words, boom, not very hard. And with reading, I was really being hard on myself. Like, you know, when they say reading out loud, the neurologist told me over and over again, that reading out loud was a big deal, that was a bigger deal than doing puzzles or painting to actually read out loud. So I'm thinking I got to get a lot of different books and magazines to keep her reading out loud. Ya'll, I had four or five subscriptions to national newspapers, probably 10 different national magazines. When it boils down to it, what my mother will read over and over again, is the old magazine, that's it. I continuously have 15 old magazines at her disposal. I put about four in front of her per day and she reads them over and over again. I may not have her read the same one back to back, but I will have her flip through the same four in a day and she enjoys it. It just so happens that even the ads that Oprah chooses fit for her at least at this point, the print size font type work for her, reading the pictures work for her, and nothing in there is startling or painful to her psyche so I go with it. We used to be able to read the Bible, we can't read the Bible no more it's too big soon as she sees it, it's just overwhelming the sheer size of it, but she does like very very small short prayer books. But they need to be pretty with a lot of flowers and stuff on every page, like most of the page needs to be visually attractive okay with birds and flowers and doves and stuff like that and maybe a sunset in the background okay with curly cues with the Where is God in the G is all curly. Where you can't tell is that really a G or maybe it's a rod iron fence in the French Quarter in New Orleans or Paris on the Champs lyses you know what I mean.She likes those kind of little prayer journal books and the prayer needs to be short, okay. Amen needs to be either on one page or about a second page and needs to be Amen. And she reads it with a little finger going side to side and then she says Amen. And she looks at me and she says "Is that right JG?" I said "That's right Zetty." She's happy. Outings- At this point. outings are much more trouble than they are worth. My mother is absolutely in the advanced severe state of Alzheimer's outings create a ton of stimulation, the people, the sounds, the smells, the movement, it all is very overwhelming. And if it's an event where she knows a lot of people, well, she doesn't really remember anybody but if it's an event where there are people who know her and then they want to come up and hug her or kiss her and say how you doing, then while they are trying to be loving and caring, she's still overwhelmed because she doesn't know them. So I have to be very mindful of that because they're just trying to be supportive and nurturing, but then their feelings are hurt when I'm trying to shoo them off or I'm trying to say who do I think can really manage my mom and not say the wrong thing that's going to potentially spiral my mom or who can handle a conversation with my mom in a way that will not be damaging to my mother. Anyone who comes to our home for a visit, they have to go through a 15 minutes sit down with me in the kitchen, basically it's like Buckingham Palace. Zetty is Queen Elizabeth the house ain't that big, we don't have servants, but there is protocol. Breach it if you want to, touch the Queen if you want to, you will be escorted from the premises swiftly asked Megan Markel. No, I know Megan actually left on her own. However, you get my point. I prep them on what they can and cannot say. And I tell them I will be sitting with you the entire time. You have to follow my cues. I give them a few safe words, which pretty much means if I say this word, you need to hush up the line of questioning or words you're using, fall back into the two safe things you could always say no matter who it is. There are two safe statements you can always say to my mom. The first thing is Zetty, You did a great job and you got all your work done. The second thing is Zetty I love you so much. It does not matter what the visitor said to Zetty before that, it doesn't matter what Zetty is saying in that moment, you can interrupt her if she seems a little distracted or anxious or is rambling. That is the go to- Zetty, you're doing a great job. You got all your work done or Zetty, I love you so much. Boom, instant happy smiles, everybody hugs, that's it. On television GSN The Game Show Network, or as I like to call it, give some network it is the gift that keeps on giving. She cannot get enough, the rest of us remember that we've already seen every episode of Family Feud, of America says, of catch 21, my mama does not recall that we've seen it. She gets as excited when all of the music starts playing and the people jump up and down because they won whatever if you are in her room, that is her world. All the rules in that room are made for her. There are other TVs in the house that you are welcome to go and watch or you are welcome to not be at the house. When I tell y'all this has been one of the longest hardest lessons for me to ascertain, one are my mama's favorite words since she has had advanced Alzheimer's. She will throw her an ascertain in their own new at any moment at any time on any subject, ascertain. This has been literally one of the hardest concepts for me to ascertain in a sustainable manner is that variety does not help my mama, in most cases. It's tricky because J Smiles, baby variety is what I am it is what I do, it is what I am known for. Seriously, I'm a mechanical engineer, a product designer, a lawyer, a comedian, a philanthropist, a podcast host. I've been to all seven continents. I've lived on three continents, and I'm not married because I haven't been able to settle on one guy for more than two years, actually for more than 21 months, but who's counting? Don't, don't get distracted, that is another kind of podcast, okay.? All of my friends, my family that's what I bring to the table like you don't call me if you want a gourmet spread, okay, that's not what you call me for. You don't call me if you want somebody to sing, don't call me for that. But if you want variety in an experience I'm your girl, that's actually a huge way I show up and spread love. I can give you a new experience every time we get together. And I've done that all my life with my mama for my mama to spice it up. And I had to say J Smiles we can't, that actually is discombobulating for her and stressful for you, which could then also be creating more tentacles of tension in the environment that you've put her in. Don't, I don't do that no more. The snuggle up- number one- variety is relative to the stage of Alzheimer's or dementia related disease that your ello is in. If it's very mild, early on maybe variety will still work but be honest and be observant. If routine and stability and a whole lot of the same same same is better for them, go ahead. You may be bored stiff, but they are likely happy and comfortable. Number two-join me live every Monday night for Parenting Up, a really casual conversation on caregiving. The show is broadcast on getvokal.com, so it doesn't matter where you live anywhere on planet Earth. The link will be in the show notes. Let's chat it up. Can't wait to hear from you. This is actually an extension of the podcast, consider it companion content not nearly as formal, whatever topic comes up, we'll roll with it. Number three- please subscribe to Parenting Up emails. Let's keep this global conversation growing caregiving is hard but we got each other, link in the show notes. That's it for now. Thank you for listening. Please subscribe for continuous caregiving tips, tricks, trends and truths. 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.