Caregivers, Celebrate Your Wins!

In Western culture, certainly in the United States, anytime you're introduced to a person, socially, professionally, romantic, or platonic, two minutes into the conversation, the default question goes to what do you do? And the implication is, how do you make money? How do you spend your time? One or the other and what I realized is, I always ramble on with academic pursuits, corporate America, entrepreneurship, philanthropy, comedy, this podcast, blah, blah, blah. What I don't say or very rarely say is I'm a caregiver. Which is nuts, all because being a caregiver actually consumes my existence. It dictates my schedule, my money, my mood, but why, like, aren't I celebrating it publicly and talking about it and leading with it, like I do every freaking thing else? Parenting Up is the caregiving adventures with comedian J smiles. It's the intense journey of unexpectedly being fully responsible for the well being of my momma. 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 stared comedy because this stuff is so heavy, be ready for the jokes. Caregiving newbies, OGs, village members trying to just prop up a caregiver, you are in the right place.

Hi, this is Zetty. I hope you enjoy my daughter's podcast. Is that okay?

Today's episode, caregivers celebrate your wins. Parenting Up family I felt like smacking myself in the face with a wet fish. I could not believe the number of years, conversations, receptions, emails, text messages, direct messages that I entertained without including I'm a caregiver. Really, Jay, how do you answer the question? Nice to meet you. What do you do without including I'm a freakin caregiver? It's totally okay if that's not the first thing I say, but within that initial conversation. For my life, it should absolutely come out because it is the spine of the skeleton of how I live and what I do. When I was an engineer, for Ford Motor Company I lead with I'm an engineer for Ford Motor Company because working that job dictated my schedule. Are y'all following me? I could not make any plans with family or friends, my church, hobbies without considering my responsibilities for Ford Motor Company, period in the story. That's my reality with Zetty as her primary caregiver, an only child, I can't do anything without considering is she covered. I may not be the person who's caring for her, but I have to decide what's going to happen with her care before I can determine, am I going on a trip, am I going to start a business, will I be able to go on a comedy tour, can I continue the Parenting Up Podcast. I was scratching my head figuratively speaking and searching all of my emotions around, why in the hell did I not say I'm a caregiver? Like, damn J, are you embarrassed? Are you confused? Are you ashamed? Or do you believe people will not care and rather than be frustrated by their lack of empathy, or concern, you just avoid the conversation and keep it light. You know how it is, if you recognize that you have a depth of compassion, understanding, or appreciation for a subject matter, and the person you're talking to could care less; it's better to steer clear of the subject. It's almost like Alzheimer's is the fourth conversation to stay away from at the dinner table. Sex, politics, religion, and Alzheimer's, just don't bring it up. But I'm an activist and if I don't bring it up, who the hell will? I care and I want to push the conversation on this subject or want to raise awareness, maybe get some more funding, find a cure, pull back the cover on the mystery of this disease. So people aren't so weirded out, like, oh, Alzheimer's people are they are a zombies?Are they gonna bite you like Dracula? I started preparing myself for the conversation in advance, almost like a job interview. I thought, Okay, let me start in environments that are little more warm and fuzzy. So holiday parties, church, house gatherings, where people knew me casually. Hey, Jay, I'd like you to know my neighbor, Paul. Talking to Paul, nice to meet Jay, what do you do? I can't lie the first couple of times I blew it, y'all, I slid right into default mode. Oh, well, academically and now I'm a comedian. What do you do Paul? Pitched it right back to him, like, dang it. Go to the restroom, shake it of, get something to drink. Like, the next person I meet tha's new, I'm going to give it to them. I actually came up with a series of talking points in my head to prepare myself for approaching the subject. Hey, my name is Jay. How are you? And now when someone asked me what do you do? This is my response- what do you mean by that question Teresa, John, David, whoever I'm talking to? What do you really want to know, when you ask me what do I do. And I smile is big and as warm and as friendly as I can. And I say I'm really not trying to be evasive, but I have a very extensive academic and corporate background. And I've done a lot as an independent entrepreneur. So are you just kind of trying to keep it light or do you have a specific question about how I spend my time currently? And when I give a person that type of window into the way my brain works, I know if they are live or if they are Memorex. Shout out to Mahalia Jackson, if you don't know her, please google it. I know if they are real or fake. If they are faux, F A U X or not. Are they just shooting the shit or do they really want to get to know me. There's no sense in me digging in to reveal my vulnerable nature around being a caregiver, if it's someone who literally is just trying to give me the 90 second cocktail reception speech, and that's cool. I don't know about you, Parenting Up family, but sometimes it is very refreshing to share a bit of my story or give an example of an interaction with Zetty with a stranger or an acquaintance slash new friend, rather than telling it to my caregiver crew. Sometimes they feel so heavy to me to continue to throw it on them. I don't know they swear it's not a burden and they are like ah Jay, we signed up to be in this with you and Zetty till the end and I'm like, I know you did, but ah, you know, it's me. I like to spread it out a little bit. So the idea of sharing a little bit of my stress with new people is inviting. Anywho when I give that introduction, if the person leans in with a sincere look, if their body language expresses go ahead, girl continue versus deer in the headlights. Deer in the headlights means cut, cut, cut cut. If I see deer in the headlights, I give a quick fast- went the Howard, went to Stanford, went to Cumberland, did a stint Gillette, Ford, Cochran Firm. My mom has Alzheimer's, I'm her caregiver. Got a podcast, I do comedy and what do you do? And I keep it like that and they're looking at me like what? They look bewildered, they don't ask any questions and I'll let it go. Boom, keep it moving. But for an individual who seems intrigued- I say actually, what I am the most is a caregiver. That's what I am, first and foremost, I don't get paid for it and then they sip the drink or eat a bit of bruschetta. And it's not bruschetta, family is bruschetta, trust me on that. Or chicken wing or they dip a fry, whatever, they keep going, keep listening, ask a question and I say yes, I do have three academic degrees. And I'm a philanthropist and an entrepreneur, but I got to tell you what I do first is I'm a caregiver. I have to make sure that my mother is okay and they are like what does she have? And I say Alzheimer's, do you know much about it? Well, I have a co worker whose mother in law has it, but wow are you telling me that even with the other pursuit that you're interested in or connected to Jay, your life is controlled by your mom's disease? I'm like, Yes, it is. And now we're walking to get another drink or to refill our plates together because I got their attention and I'm sharing with them how even though I have professional help, and I have great friends that assist me, it's hard and it's heavy. In mainstream non caregivers don't get it and I feel better when I believe I'm a dementia evangelist spreading the Good News of this crap sucks. We're not getting paid. We still have to do something to earn income. We have to manage our lives. We have to keep our mental health and our physical health at some baseline that allows us to keep our ello above water. That's at least two people were responsible for heaven smevans if you are a sandwich generation caregiver? So you have children and a spouse or partner those conversations get so intriguing and so thrilling is almost like they're looking at me like I'm a documentary. I'm laughing at them. They're asking me questions I'm not you know, which I thought about that like, well tell me again. Often they have great ideas because it's so new to them. It's like taking an alien to an NBA basketball game Parenting Up family- This episode is sponsored by Circle Of a new family caregiving app when we're caring for our ellos sometimes we're not sure what to ask for. Circle Of 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 Another point that came to me in my own reflection around why did not talk about it more to people I didn't know or just bring it up say on an airplane or at the mall or waiting in the grocery store line. People say hey, how you doing? Your doctor's office waiting to be seen. Oh how you doing? Oh, that's a nice purse, nice pair of shoes. What do you do? Like dang why do I not say it more because I'm a repper. Family let me just tell you generally speaking J Smiles is a repper, I rep where I went to school, what country I have citizenship in, my home state, my favorite food. I'm a repper I rep who I'm with, where I'm from, what I do, I'm like man what's going on? My comedy tagline is the conscious comic. When it doesn't make sense, I dig in for the punch line and this is an area where I didn't make sense to myself. Zetty matters the most, therefore being her caregiver matters the most. So why the hell don't you lead with it Jay, you know what I came up with? Because I didn't choose it. I didn't choose to be a caregiver. Now I did choose to continue loving my mother and I choose to make sure she's okay and cared for in a certain manner. But I didn't ever as a kid, or a younger adult say man, I hope one day I really get to return the favor for my mom and wipe her ass, the way she wiped mine. You know what I mean? So there's a a secrecy to being a caregiver. Definitely with Alzheimer's, the disease is so quiet. It's so misunderstood. Like oh, is your loved one going crazy? Are you gonna keep them in a closet? And not in the closet as in a sexuality thing like in the closet because they may hurt themselves or they may hurt someone else. So nobody talks about it, I though wow is that the heaviness Jay, is that the reason why you didn't lead with it more often or with a megaphone? Because that's what I usually do. I typically don't shut up about whatever it is I'm doing because that's the kind of passion I have. So here we go, I'm celebrating now and I'm promoting the caregivers all around the world, let's celebrate. We do it for everything else. Jesse Itzler, one of my mentors says, "Be where your feet are", that means be present. Another phrase is be 10 toes down mean, I'm here. I'm in it. I'm passionate. I'm gonna get 110% Okay, I'm an engineer. I'm a math person. You can't, you know, system can give 110%. But I know people are really just trying to say, I'm going to give it all I got. We celebrate our birthdays or anniversaries, how many years you've been on a job, with we throw a party or a house warming. We throw a party if we leave in a house, we leaving a job, we having a baby. If we lose a baby, we throw a something. We throw an ugly sweater Christmas party. We have some kind of gathering, acknowledging pretty much anything in our lives. We get a new puppy, we get a goldfish. Easter egg, Kwanzaa, Hanukkah, may not be as elaborate, but we're doing something. Fourth the July young girls even having period parties, just got my period, throwing a big spaghetti party, which I feel is really that's tricky. So boom celebrate the anniversary of you becoming a caregiver. It's not about celebrating when your ello was diagnosed with a disease. No, no, no, no, no. See, that's where my brain got caught up initially. Like dag Jay you don't want to celebrate when Zetty became beholden to Alzheimer's, no, I'm celebrating the month that I committed to being with my mom through this disease, as long as there's breath in her body and she's on this earth. And every year I make it to another year, hell yeah! (applause and celebaration sound) I did that because I didn't know what the hell I was doing. There wasn't a book or a person nobody gave me a care package. I didn't leave the hospital was Zetty with a onesie or a sippy cup. Or this what to do on your first night when your mama thinks the house ain't her house even though it's the house she'd been in your whole life, so how about that? I say first thing is celebrate your anniversary. Now you may not know the exact date, but let's just say you can remember the month that you became a caregiver. If you can't remember the month, hell pick one. Maybe you decide to celebrate being a caregiver on your ello's birthday. But I'm absolutely saying that we celebrate this with a positive energy because we're celebrating you showing up. Day in and day out, year after year, learning on the job on the fly. You are building the plane why you flying it. Googling how you fly a plane and you haven't crashed it. You better celebrate yourself! In between your anniversary date, let's throw in celebration for small wins. The first time you get to sleep through the night do something good for yourself. If you like chocolate, or get your favorite chocolate if you like beer, go out of your way to get your favorite beer and make sure it is ice cold. And sleeping through the night might mean it's the first time that your ello actually slept through the night. Or it could mean it's the first time after being a caregiver, that you were just comfortable enough to sleep through the night, right? You may have had the assistance of medication might have been on vacation. But whenever you are like man did I just sleep seven to eight hours straight? I didn't get up to go to the bathroom. I didn't jump up sweating scared something was wrong with my ello, that deserve some cheers. First time you hired an agency, what? Come on y'all, how scary is that? You got to give these people all this money. You don't even know if they don't do it, right? You leave them with your ello in your house or in your ello's house. Maybe you don't even have a camera set up yet on the Wi Fi goes out. You try to look at the camera from work, you can't tell if Big Mama is all right. You like Lord, I can't even see sister Rosalyn. Is they okay have mercy. You had this agency, you're not really sure they did what the state said they're supposed to do, but you had to go back to work. You've already used up all of your FMLA or whatever the state gave you or your nation gave you to be off depending on where you live. We have FMLA in the United States. It's a big deal. The research that you had to go through to decide what agency you were gonna hire. The first time you hire anybody they're not a family member, they're not from church, it's not a neighbor that's just coming over to sit around you gone give them some flowers, a six pack of beer and a ham sandwich. If you get them a little mind that don't count, I'm talking about a stranger where you had to take a picture of their driver's license and social security card. When you do that kind of research and hire somebody, you better celebrate yourself. How about the first time you were committed to an event, but you were strong enough, courageous enough to let that person know, "Hey, I had an awful day with my ello I can't do it. I cannot go through our plans." You stay home and you don't feel guilty. Celebrate! A positive area of celebration all the time is when a caregiver learns how to create boundaries. Oh my goodness, now I'm still working on this. I'm more than a decade in and I am still learning I get the willies trying to put up a boundary. I try to put up a little bit of a fence and I started taking the fence down aas soon as somebody walks near me, Uh okay, I'm sorry, what you need? The boundary could be as small as I'm going to have 15 minutes every morning before I get out the bed. Before I go check on my ello or I talk to the facility or I talk to my kids, my spouse, my boss, anybody,his 15 minutes is mine. I don't care what's going on. Now if the house has burned down I would like you to get out the house, but other than that, it can wait. Maybe I'm going on vacation. Vacation could be I'm not even leaving the house, but I am going to go to a room and lock the door and can't nobody come in here for 24 hours. I'm going to go and stay at a friend's house, but I'm going to go on a vacation, and I'm going to announce it to everybody. I'm gonna take a bath, I'm gonna lock the door. I'm going to be in there for at least two hours with music and wine and candles. Maybe it's an ice bath, I think those are very painful, but they're useful for your circulation and to stop inflammation. Inflammation comes from stress and the inflammation can cause a lot of pain, therefore, it's useful to do the ice baths. Whoo hoo hoo. If you want to, you can get in that tub and just sit there in that hot water and soap for hour, you might not even be dirty. That's the kind of boundary creating I'm talking about. Your favorite wine or vodka, pair of socks, sweatshirt, soap, shampoo; hide it and don't feel bad about it. That's a boundary. You're a caregiver. There is so much that you give up and share and sacrifice. Hey, this one type of flavored water that I found from Turkey that now is available in Trader Joe's in 16 ounce bottles with apricot flavoring, I'm not sharing and is in my closet and I put it over ice; period, can't nobody have none. Nobody at all anywhere ever not even Zetty. See what I'm saying, boundary, I'm celebrating me. Don't even talk about my Gouda cheese. Let me find you in the cheese thing, it's a lot of cheese in my refrigerator, all kinds of cheese. If you come to visit me and you like hey, J smiles, I really like munster, I really like sharp extra, I don't like American, white American; I got you. Touch my Gouda and see. I'm pushing for us to be collar poppin caregivers. I think this is bigger than self care. Now go with me on this, self recognition is what this is. The caregiver is saying I matter. This service, this sacrifice, this free labor of love and care has limits. And I recognize that I have some limits. And I'm going to celebrate me out loud. So much of what we do as caregivers happens internally. Our acts of service towards our ello that's external, but the sacrifices and the burdens and the frustrations are internal. And at a minimum, I'm saying let's try it. Let's try to be dare I say cocky enough to poke our chest out peacock a little bit and say I'm a caregiver, a family caregiver, and a teacher and a lawyer and a high school football coach, paramedic, but I'm a family caregiver. No, no, I don't I don't I'm not a professional. I don't get paid for it, but I'm a family caregiver. It absolutely dictates my career, my schedule, it's a part of what I do. Let's do our own marketing research, scientific study, test case thingamajigger. I honestly believe if we pop our collars a little harder, and we lead more in non-medical non-caregiving circles with what the job is, with what the responsibility is, with what our commitment is, and the priority of being a family caregiver and we just talk about it, not when we're worn out and crying because somebody just went to the hospital. We're just talking about a football game. Hey, how you doing? It's just in line waiting for some pizza, and a Chardonnay. Hey, what do you do? Well, I'm a family caregiver and I'm a saxophonist, how cool would that be if that becomes the conversation all over the world. Because then they know how much we value it, and how much we need them to respect it. If it's unspoken, then it's unseen, right? That unspoken value is hurting us. Lets go and up our worth and our respect. We can pour into ourselves because until there's a cure, we all we got. The snuggle up, Number one- mark your annual caregiver anniversary. The month, the time of year. Whatever feels right for you. You made it. You learned a lot. You made some mistakes, but you're still here so you're winning. Throw a party, go to lunch, go to the spa, buy yourself a suit. new pair of shoes, go to sleep for a whole day. Acknowledge it, tell your co workers- Hey, it's my caregiver anniversary. High five yourself. Number two- celebrate small wins. You can tell other people, you can keep it to yourself, maybe is the first time do laugh and cry simultaneously. You know I'm talking about you snorting it's snot coming out, yeah one of those. Your ello did something you got frustrated, then it got funny all at the same time. Yeah, but celebrate the fact that you found humor in the pain. The first time you clean your ello properly, maybe they're incontinent, maybe they made a mistake, who knows maybe you clean their face or you clean it behind either way, you got through it. Number three- be a pollar poppin caregiver. A C B C G, when people ask you what you do consider adding a family caregiver to your answer. Let that part of your life be seen in normal environment anywhere, anytime, with anybody. Let's take the mask in the mystery of who we are. 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. It's on getvokal.com Mondays at 7pmEastern 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 or Parenting Up newsletters. 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