J Smiles gives family caregivers the real, confusing truth about celebrating Thanksgiving when your LO has dementia, ALZ. Yeah, you want to love on them and smother them with food, family and fun. But is it a good idea? J has tried a variety of celebrations so you do not have to go in blindly... let's Snuggle Up®
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I walked into the Apple Store. The guy smiles so brightly. Hey, how you doing, ma'am? How can I help you? Like he could smell my apple addiction. Listen guy, don't get so excited. I made my purchase online. There are no more coins coming out of me today. I showed him my QR code. He directed me to the back where you could pick up your product. I get back there, a nice lady says, Hey, Miss Smiles. How are you? It'll be a few minutes before your product is up. Now, it was the Tuesday before Thanksgiving, so of course, she hits me with the obligatory holidays small talk. You got big plans for Thanksgiving. Me-No I don't do Thanksgiving big anymore. It's just another Thursday. She smiles. Oh, so are you going to do something a little more intimate with your close friends? Nope, it's just another Thursday. Baby girl- oh, asmall meal at home with your immediate family. No, it's just another freaking Thursday Apple lady. Parenting Up caregiving adventures will comedian J Smiles is the intense journey of unexpectedly being fully responsible for the well being with 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 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, Thanksgiving is just Thursday. I mean, I was in the Apple Store for goodness sakes. How many times was that sales agent going to ask me about Thanksgiving context clues lady. I do not celebrate Thanksgiving in a big way anymore. It's just another Thursday. Is this why my contacts don't sync quite right after every iOS upgrade because these Apple people aren't quite as quick as we thought that really drives home the point of how uncomfortable society is with the notion that everyone isn't happy and celebrating the holidays full out. I love Thanksgiving and all the holidays. I'm a very celebratory personality, generally speaking, but my mother has Alzheimer's and the holidays just don't work the way they used to anymore. I got to say in that Apple Store, I'm so proud of my maturation as a caregiver. I did not go off. I didn't say a snide remark like well, my father dropped dead of a heart attack several years ago, my mom has Alzheimer's, so the reason I don't celebrate Thanksgiving is my family has fallen apart. Now, how you feel about that? You pushed me to the end lady where I had to explain to you why I will be alone, watching some version of Disney Jr., eating fruit loops, and drinking a warm Heineken. Are you satisfied Miss Apple? I didn't do that though because it's also not her fault. We are socialized to make commentary around the holiday. Is it your birthday.......oh, what are you doing for your birthday? And any holiday is specially Thanksgiving, Christmas, Easter, what are you going to do? Nothing, I'm not going to do anything. I'm going to let the day come and pass just like Monday, Saturday, yesterday, tomorrow, hopefully, hopefully, there will be no events. That is the life of a caregiver. It's not called the long goodbye for no reason. You're watching your loved ones slowly but surely slipped through your fingers. There are so many opportunities in casual conversation for people to pick up on what we're putting down as caregivers. Hey, I don't do that anymore, or that's not good for me or that doesn't work. Maybe we can help other people understand our plight a little better if we extend the conversation to explain why. So I'm going to give a few examples. Why don't I celebrate Thanksgiving big anymore? Because it confuses my mother,I tried it and it confuses her a great deal. So for me, it's not worth it. In season one, episode 13 with Christine BD, one of my main caregiving crew supporters. We talked about one Thanksgiving with Christine, her mom and her daughters did a fantastic job preparing this amazing, big spread of Thanksgiving food. Zetty was a lot newer to the world of Alzheimer's, then getting her to sit still, to concentrate on eating, to stay at the table to hold hands while we prayed; all of that was a tricky task. I was overwhelmed because I wanted Zetty to really engage with Christine, her daughters, and her mom because they went through all this trouble. I shouldn't say trouble, but they put forth the energy and rearranged their schedule to create a Thanksgiving environment for us. So I'm like, Okay, we're gonna sit around the dining room table and we're gonna make it happen. But what can you do if your ello is just not in the mood or not having a good day, or maybe the disease is just winning in that moment. I recall getting very dressed for that Thanksgiving meal with Christine. I wanted her to be in cute clothes, not Sunday go to meeting clothes, but better than her typical daily loungewear. But it took a lot to get addressed. It took much longer than I wanted it to. So the dinner was ready. It was hot. They were waiting on us to come downstairs. That's stressful. Then she had to go to the bathroom again. Then we get downstairs, they're saying hello Zetty doesn't really remember everyone. And I could tell by the look in her eye. So that's awkward. What do you do with that? because they're at our house, again celebrating Thanksgiving with us before you think I'm being extra, which I'm capable of, but this time, Christine and I had been inter woven in each other's lives for like a quarter of a century. Her daughters had like some kind of grandmama Auntie grandmama nickname for my mom, like Grandma Zetty or something. I lived with Christine's mom. So, if Christine looks at Zetty and says, "Hey Zetty, hand me the mac and cheese, and Zetty doesn't respond or looks at Christine, as if she's a stranger, that's a no go; you know what I mean? Or would one of Christine's daughter say, Hey, Zetty, come sit by me or let's take a selfie and then Zetty just looks at me, JG like, hey, is that okay? Are they safe? And then Christine's mom pipes in with Oh, Zetty, you know, Maya, you love Maya and Zetty's like, who is Maya? And she says that right in front of Maya, Christine's oldest daughter. You feel what I'm saying in terms of awkwardness. Now, of course, they all know that Zetty has the disease. Everyone in there has watched the declined. They have witnessed it as close as any human being could, with the exception of myself, but is still tough. In an intimate moment, like a holiday celebration, when you go to take a selfie with a auntie grandmama mentor person who has been holding you down your whole life and now they are know who you are. That's a stress I don't even want to add to a teenager who's already dealing with how does my hair look? And did my boyfriend call me back? Parenting Up family- this episode is sponsored by Circleof have a new family caregiving app. When we're caring for our ellos sometimes we're not sure what to ask for. Circleof makes it easy to surround herself with support from your community, it's thoughtfully designed with and for the caregiver. And it's totally free on the App Store and Google Play. Check out www.circleof.com/download for more info Okay, don't think that I gave up on celebrating Thanksgiving. After one or two years, no, no, no, no, no. Thanksgiving was such a major family celebration in my life as a child and a young adult. I came at it from every which away. I'll take a moment to do a J Smiles international dialect check. For those of us in the south eastern part of the United States, we say every which away to suggest that we did everything we could think of. Some people might say everything under the sun. One year, Zetty and I went to celebrate at a friend's house. They lived locally. The reason I thought it would work well is because that friend also had a parent with some health challenges. So like okay, this family knows and understands how tricky things can be. Y'all it was a circus. Okay, first thing is we arrive later than the dinner was supposed to start, but they told me Jay, you and Zetty come whenever you want. We know that Zetty is a night owl, no rush. Dinner supposed to start at 2, you all come on you want. I get there about 3, 3:30 I'm feeling fine. We get there. They like okay we nibbled a little bit, but we were waiting to really get into it, so we could say grace when you and Zetty got here? What? No, that wasn't suppose to happen, you all were supposed to be on like, plate number tray? That means three, that's my fancy French. Noooo.....now it's something to four, I'm already feeling guilty. Y'all been nibbling on finger sandwiches all this time. Oh, okay, so we say the prayer, but y'all Zetty can feel the energy. Know what I mean? She can sense something. I don't know what she can sense because she's not really talking to me and telling me, but she's sticking so close to me. But my friends who know her, they are overly exuberant, to get her to sit by them or take her coat. All of this extra attention towards her is actually backfiring. It's making her more apprehensive. I'm trying to explain that. They don't get it. In their minds, they're trying to give me a little bit of a break. Jay, we got her you know, you go sit on that side of the table or go in the other room watch TV, we got Zetty. And I'm thinking No, you don't got she don't want to get got by you. She doesn't know your house. I didn't realize you all were going to be like this. You have a loved one who were also had some health challenges. Are you really doing this to me? Okay. Got to be more careful. So now we're eating or we're trying to eat, but I'm trying to sit beside Zetty and I want to let her eat on her own. But I want to assist her some because I don't want her to get her clothes dirty, Zetty hates for food to be on her clothes. Like it can't turn into a meltdown. And I didn't bring an extra top or blouse. I always do carry extra pants and undergarments and things of that nature. just in case we have to go to the bathroom and fix all that up. But I don't have anything. Should we get some gravy and some dressing on our blouse, you see what I'm saying? But people keep calling me away to show me something or hold this baby. No, I don't want hold a baby. I got a baby. I got a baby, that's my same size and I got to be with her this entire dinner. Who doesn't understand what's going on. And there's a pet, that they were kind enough to put the dog in another room, but the dog is barking. We know what that means family. That's Hoyes, that is a lot of extra commotion. And their kids and the kids weren't even being unruly. They would just be in kids. It's Thanksgiving. Why wouldn't they be playing or running around? They are souped up on cake or pie or Kool Aid. I don't know, but I'm looking around like this was the opposite of a good idea. There is so much stimulation in here, that equals NO, but how do I say we got to go without offending them because They waited to start eating for us. Now, it's 6,7,8 o'clock, something like that and it's game time. But it's not one game is 10, 11, 12 games happening? There's the game area for the kids. Then there's the card game area for the adults who don't want to watch the professional sport event that's on the television. And everybody believes they're in their own world contained to their own bubble of volume. Aha, aha, except not, you are not, not when my Alzheimer's Mama is in that house. Even though some people were in the kitchen, and some were in the formal dining room, and some were in the family room den, so technically, they were in different parts of the house. But these walls weren't concrete. We were not in a military bunker. Of course, the noise is bleeding over. This is Thanksgiving. This is ummm, this is gratitude. This is who I can tell when Zetty is hitting the wall because everything I'm grateful starts to confuse her. Everything! Like putting a straw to her mouth with something to drink, and she doesn't even know to open her lips to take a sip. Or if I say, Okay Zetty, let's stand up. And she just looks at me. She doesn't say uh or what do you mean? Nor does she push back from the table or attempt to stand up? She's just sitting there as if I'm not talking to her. When she starts to shut down in that manner, that's when I know, Okay all right, the baby is over it. The baby has pulled the plug out of the wall. It doesn't matter that this is a loving, friendly environment. Everyone has hugged on her and kissed her. And they want her to feel welcome, but this is not about to be a positive experience no more. When we get home who knows how long is going to take me for this to get out of her system. There's an unraveling that has to happen for her to calm down. For all of her nerve endings to stop firing, stop misfiring is more like it so she can just settle back into her pace of life. In the car on the way home, I glanced at Zetty, she looked like a deer in headlights. Bambi on ice, man. I thought hm hm hm, this is awful. My friend and their entire family went out of their way, made extra modifications for J and Zetty, it didn't work. Zetty is about to be no good, tomorrow is going to be trash, tonight is going to be a cluster you know what? Wow, good job JG, way to go. And I was right, that night Zetty was a nervous wreck. She just couldn't settle down. The next day, she was crashed, the whole day. She slept, her eating was off, her temperament was off. But I knew what happened, I gave it a shot, I tried to celebrate Thanksgiving. My loved ones, my family, my friends, Zetty's friends, Zetty's former coworkers, her girlfriends, her platonic male friends, they love this lady. They are consistently calling, looking for her sending me emails getting up in my DMs trying to figure out how and when and where they can be with her celebrate her love on her. And it's hard to explain, you can't celebrate in a traditional way anymore. I don't really know what to say- you can be around her, and you can hug and you can kiss, and you can love on her, but that traditional celebrating ahh. Look at some of those pictures from before and go back into your Rolodex of memories, sip on that for a while. Caregivers, we cannot expect others to understand what we mean, when we say that environment or that celebration, or that exuberance of love that you want to give to my ello is actually going to cause them pain. It doesn't makes sense to them., why they can't celebrate Thanksgiving. But you just have to stay the course. At least that's what has worked for me. Every other thing I have attempted on some level has backfired. It was just a matter of how big was the backfire? Was it sinking quicksand, was a little bit of booboo all my shoe, egg on my face, was Zetty discombobulated for two days or 20 minutes. As there is caregiver, my job description is pretty simple. Now execution is tough as hell, but the description is pretty simple. Keep her as safe, as happy, as well nourished, and as medically stable as possible, that's it. That has nothing to do with thanksgiving. She doesn't know that it's Thanksgiving. She enjoys being happy, yeah. So whenever I can bring her elation, I'm going to do it. Another thing, I don't want to risk adding stress or strife to a friend or family member who is trying to show out for Zetty, why take that risk? Someone flips around their entire holiday celebration, with the hopes that it might be pleasing to Zetty and I know good and well, Zetty will never remember it. They could just the same, the Thursday after Thanksgiving, come and visit Zettyy with a chicken sandwich and convey the same amount of love and affection. Let's do it. My hope is that as family caregivers, we can loosen the grip of tradition where it doesn't work, but maintain the spirit and the sentiment or the purpose of the holiday. The purpose and the sentiment of Thanksgiving is gratitude, to show and give gratitude for the people who have supported you and loved you throughout your life. And you can do that without a meal. And you can do that on a day other than the fourth Thursday in November, full transparency, it has been quite a few years since JG and Zetty have celebrated Thanksgiving in a way that those in the United States would recognize. What we do is we hug and kiss a lot on that day, but guess what, we hug and kiss a lot on every day. One thing that does happen every Thanksgiving is that we are together. I make it a point to not travel or work on Thanksgiving, and be away from my mom. Emotionally and mentally. I want to be near her where I can see and touch her on that day. Who am I kidding? I kind of have to do that. My caregiving team, everybody asked for Thanksgiving Day off to be with their respective families. If your ello happens to be at the early stages of Alzheimer's, or mild or mild to moderate, and having a celebration with Thanksgiving is still a great option- The Mayo clinic.org has some tips. They say to avoid disruptions in your ellos routine. So if you're going to have the celebration at your home, do all you can to set the time where visitors are coming in and out. Such that it really coincides with the good time of day for your ello. So if you know your ello doesn't like to have dinner before 4pm, don't set dinner for 2pm on Thanksgiving. Another thing they suggest, have a quiet place set up for your ello somewhere in the house. They will need a place to escape from all the extra energy that is happening before because of Thanksgiving. Even if it's fun, even if they're enjoying themselves, think about a toddler, where you'd have to put them down for a nap even if they're having a really fantastic afternoon with their friends. You know, if you don't stop them and force them to take a nap, you're gonna have hell to play later, think of it a little bit like that. Now, the Mayo Clinic then put it that way, but that's J Smiles' interpretation. They said even consider potentially having one person at a time, come in meet with or visit with your ello in this quiet place. If you can tell that your ello is starting to become agitated or out of sorts by the amount of noise that's happening in the house. If your ello is in a facility, and you wish to celebrate Thanksgiving, they suggest that you do the celebration in the facility. If the facility already has a holiday celebration plan, they believe it is better that you go and participate in that for your loved one. Now listen, they're not trying to tell you to forego having any event at your home. They're simply suggesting that as it relates to what your loved one will experience with you that you do that at the facility. Now if the facility is not having a shindig, still create your loved ones Thanksgiving shindig at the facility. Do not bring them out of the facility, that's too much disruption to their routine. Picture it like this- You will be taking them away from their home because that facility is now their home. They've become accustomed to that smell. That chair that bathroom, the bathroom is now over there on the left, those people and so if you were to take them out of that facility, to bring them to your house, or your sister's house, or your church members house, that's a lot of change. And then give them a totally different menu of food, and music, and children, ooh, you doing too much. You doing too much. A J. Smiles suggestion- If the facility doesn't have anything planned, you can make something up. I'm sure the facility manager and the other residents would appreciate you bring in a little bit of your energy and love to the place where my grandfather's, Zetty's dad, when he was in an assisted living facility, there were several times where we participated. And I found them to be very open and willing to our ideas and suggestions as the family when we wanted to have programs or extend their program. So just think about it. Just think about it. But I tell you this, as for me and mine, as for me and Zetty Thanksgiving is just Thursday, baby. Kiss- Keep it simple sweet. The snuggle up- Number one- caregiving is hard. Don't let society push you into some manmade holiday debacle because you're trying to force Thanksgiving, on to your ello. But we used to do it, momma really loves Thanksgiving. I want her to feel loved and appreciated. No, it's not going to work like that anymore. Now, if you as the caregiver, want to feel some love, gratitude appreciation with family members, friends, co workers you go right ahead. But schedule either to hire someone to sit with your ello maybe a family member or friend would be willing to "tag you're it" and they come hang out for a few hours while you get to go and celebrate somewhere else. Take yourself to dinner, go rollerskating in the park, who knows, but don't subject your ello to all that revelry, at least that's a J Smiles suggestion. Number two- if you decide, I think my ello can take and I really want to host something where my ello lives. Maybe that's at your house, maybe that's at a facility, make sure that you leave a quick out for your ello. It's almost like having a safe word. Now your ello doesn't know how to tell it to you, you got to just be able to read their body language, look into their eyes when they start to glaze over, like duh, you got to call it. It doesn't mean you need to end the entire celebration, but be prepared to get them to a quiet space where they can lay down or they can sit in a quiet room and watch something on television or listen to music. And even though the celebration for everyone else is continuing, mom or dad is no longer available and everybody needs to leave them alone. Don't make any noise, don't knock on the door and go "I wonder if they okay", they go and be okay if you leave them alone. Number three- decide how in when you want to give gratitude to yourself. Yeah, that's right, for being a caregiver. You didn't have to say yes. This is a huge undertaking, and you're still doing it. Every day you're waking up, signing up, continuing to do this job that you are not getting paid for; your mind, your body, your spirit needs to be nourished, and to feel like you're grateful for your own self. I don't know what you're gonna do, but figure it out. Number four- Parenting Up has a live internet talk show. You can come grab a spot and talk to me on video; ask questions, share your story, and join the community of caregivers worldwide. As we lock arms and get through this thing together, its on getvokal.com, Mondays at 7pm Eastern in the United States. We keep the Parenting Up caregiving content coming on YouTube, Facebook and Instagram. As well go to www.jsmilescomedy.com and sign up for parenting of newsletters. That's it for now. Thank you for listening. Please subscribe for continuous caregiving tips, tricks, trends, and tru h; pretty, pretty please with s gar on top. Share and review it too. I'm a comedian, Alzheimer s is heavy, but we ain't go