Caregiving is so nuanced. We can identify the major things swiftly -- medicine and food must be consumed; bills paid and so on.
What happens when non-harmful modifications appear? Those creature comforts - habits - preferences that you are accustomed to your LO choosing like clockwork. Perhaps it is always drinking coffee in the morning or wearing pajama pants instead of a nightgown... a favorite watch or red lipstick.
These subtleties can sting us more than we realize. J Smiles recounts supporting a caregiver newbie through the process of recognizing "NEW" mom can prefer things "OLD" mom would have found despicable.
J shares comparable experiences with Zetty and offers resources for the listener too.
GetVokl: Live VideoCast - watch/interact every Monday @ 7p EST USA
Parenting UP! "A Caregiving Conversation" <Unique Topic & Guests> :#AMA
📲Instagram: Parenting UP!
🖥 Facebook Page: Parenting UP!
🎥 YouTube Channel: Parenting UP!
📧 Email List: Parenting Up!
Brand spanking new baby caregiver approached me with a question, Hey, J Smiles. How do I suppress the guilt? Whoa, hey there, baby caregiver don't come here so hot, we just met. You come in for the golden goose egg question. Suppress the guilt, honey I'm still trying to figure that out a decade in you kidding me? But I didn't I didn't give the lady all of that. I said well, that's my sweet voice I said well honey, why do you feel guilty? Y'all because in my mind I'm thinking, what did you do? Did you lock your mama out? Did you cuss her out? Because before I tried to absolve you of the guilt, let me make sure that that's a worthy exercise. She went on to explain that her mother is a very prim and proper, well dressed woman, a lady who believes in etiquette, form and fashion, classic fashion. I said, Okay, I'm picking up what you put down, keep going. She says but J Smiles now she is wearing a bathrobe to the mall. I said okay, excuse me for laughing, but did the bathrobe fit? I mean, was it her bathrobe? Was the color coordinate did it go with a jeans or were we going with this? I asked were you embarrassed? She said Well, no, actually, I wasn't embarrassed at all, but my mother would be appalled. My mom would never ever walk outside in a bathrobe. I said baby caregiver that was your old mama, maybe new mama has a different sense of fashions. Parenting Up caregiving adventures with comedian J Smiles. It's 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 anything with a heartbeat. Spoiler alert- I started comedy because this 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, new mama would embarrass oh mama. I remember so clearly being in that place. That's why my heart ached so much for baby caregiver. I'm only referencing this lady as baby caregiver because she's so new to the role as caregiver, I'm referring to that period of time where your ello is early onset, mild stages of dementia. Maybe they haven't even been given the Alzheimer's tag yet. Maybe it's just dementia. They may not even be on medication yet. Perhaps the doctor is saying yeah, you should watch him, here's a prescription, but don't start taking it yet. By the way, I've never understood that line of reasoning, but I've heard that it happens. But the scenario that she was painting me, it took me right back to those early years with Zetty. Oh, I could feel it. Baby caregivers emotions were so raw, because her passion was so deep for her mother. I could hear it. I could feel it. It was very evident. She wanted to show up for her mother's so fully so completely in every human way possible. I applauded everything she had been doing, it was amazing. The diagnosis had been somewhere between 12 to 18 months, a very short period of time. Her mother was not incontinent, had all of her faculties. I shouldn't say all of her faculties because then I wouldn't be talking about on this podcast. Let me rephrase that. Her mother could still speak, articulately and her mother knew her name, could talk about her siblings, she knew the house, she understood the bathroom, what the toilet was, the kitchen, stuff like that. Her mom was totally in charge of our toileting. She knew oops, it's time to go to the bathroom. She could clean ourselves after relieving her bowels or her bladder in a way that her daughter didn't feel the need to go back and double check. No random UTIs are going down in that family, but now mama cannot handle her finances. Okay, checking account, savings account, all of that stuff is in someone else's hand, the bills, the medicine, doctor's appointments and stuff like that. The mom is no longer driving. But she can hold a short simple conversation. I was like hell yeah, y'all are still in there. I was reminiscing back like, you know how you think you sit back and think about Oh, yeah. Oh, those were the good old days. Like summertime and popsicles and getting out of school early and double dutch and okay, I can't double dutch, but I could still reminisce about it. water slides and popsicles that's kind of how I was thinking about my time with Zetty when we could really hang out at the mall or go to church without there being any concern about 80 getting anxious or having to go to the bathroom. You get the picture. And that's where baby caregiver was starting to get confused because mom still had enough of old mom in there. And I was like, wow, baby caregiver, you're still tethered to old mom. That loyalty to old mom is slowing down your process of accepting new mom ouchies. I didn't see it that directly to her. Think about it, she is now her mother's confidant, protector, source of everything and she's like, ow, I can't let my mom out the house without looking up to par. I was like, yep. I understand what you mean. Absolutely. This was a juicy moment, where J Smiles got to use her comedic skills as a caregiver. I needed to let it breathe. The same as delivering a punch line. You got to leave space for the audience to embrace the joke and let the laugh build. I couldn't run up on baby caregiver to hard, fast, and furious. She was opening up herself to me a relative stranger. She was vulnerable. She wanted advice, I said you want your mom dressed up to par when she goes outside, cool, but par has changed. Old mom might have required Augusta National masters championship, your best golf outfit on Sunday. New mom needs whatever's in the closet. We going to play putt putt golf at midnight, in the rain in the dark kind of outfit. For Zetty, the two main things were always her hair and her teeth. My mother has always been obsessed, obsessed with keeping her gray covered and having her teeth look perfect. My mom has had some type of artificial something in her mouth since her 40s she got that from her mom's side. They have very soft teeth. My granddaddy, Zetty's daddy always said it because they were Creole. They don't drink milk because they always down there drinking wine and liquor into oils. Now listen, I don't know if that is the reason but I can report that I haven't seen them drink a lot of milk. I have absolutely seen them drink a lot of wine, beer and liquor and they do have softer teeth than my relatives in Alabama. So that's just, I'm not going to touch that anymore. My grandmother, and my mom had partials and denture teeth prosthetics fairly early in life. And Zetty always told me listen those are the two things I don't play about my hair, I don't, I'mnever gone go gray and my teeth. So I think, real talk, I think Zetty would say, hey, let me go out naked aslong as my teeth look, a pearly white and my hair is my normal born black color. Yeah. That's how that is getting down. Anywho I remember having to grapple with those types of decisions. What to do when you know that the first version of your loved one a no damn way they would do this or say this or stand for this to happen in their house. They wouldn't wear this. They wouldn't say this. They wouldn't let this person be in the room and now all of a sudden. I'm sorry, did you just invite Uncle James to come sit beside you at the base given table when you ain't talked to Uncle James in 10 years? Really, wow this Alzheimer's is something else ain't it. But you got to roll with the ello, that is the point I was hoping to make with the baby caregiver. Old mom isn't here anymore. Alzheimer's is a disease that we cannot see. That's what really sucks. It's so sucks. We don't have the benefit. And I'm gonna be real right now. I told you I'm always do my best to keep it honest. I'm going to be real. Most other diseases that can in your life cycle, show themselves to the public. It ends up changing how you walk, you might need a wheelchair, you may lose your hair, your arms or your legs start to become angled or decrepid in some way. Maybe you lose your speech. Alzheimers does not break the body down that quickly and that's painful for the caregiver. And that's who I'm talking to right now, the caregiver, this is Parenting Up. The caregiving adventures with comedian J Smiles, the Alzheimer's patients aren't listening to this. This is for the caregivers, one caregiver to another. We're the ones who are struggling the most with the fact that our ellos- they look like a duck, talk like a duck, walk like a duck, but that ain't mama no more and that's tricky. Because during the mild stage, and even the early moderate stage, many days, a lot of moments really feel very comfortably like, yeah, that's mom, that's dad. That's my uncle. That's my husband, that's my brother, cousin, whomever you're caring for. And it can trick you, it can lull you into a space where you forget that they had the disease because you can't see it. There's nothing for us to touch, something to remind us. It's not like diabetes, where we can take a blood sugar reading and say oh, yep, well, look at that. Let me just swap Zetty's mouth and let me see if the plaque in her brain is off the chain today. Oh, okay, she's going to be really unclear in her mind today. So just let me just put my extra tight caregiver hat on. No hell no, we don't have that. We don't have anything that lets us know today is going to be extra f'd up. Nope, nothing, its tough and for my newbie caregivers, and for those supporting caregivers, don't beat yourself up. Do not feel guilty if your mama wants to wear a bathrobe, to the mall or to church. What's wrong with wearing a bathrobe to church, who said there's a problem with it, is the bathrobe clean? I mean, if it's not soiled with urine, stained with wine on it, why not? Don't the pastor to say come as you are? Every religious doctrine that I've ever heard of says, Hey, we just want everybody to gather and be a community, loving your neighbor as yourself. Pretty much the golden rule goes across the board all around the world. I believe a little bit it's kind of our duty to start shaking up society and force them to accept how Alzheimers looks. Consider it a community service, caregiving activism. If my godson wanted to wear his Halloween costume to church in April, listen don't judge me. Absolutely, when my Godkids stay with me. I will admit, we do not do what the parents do. Whatever we're consuming involves a lot of sugar. We do not have bedtime, we fall asleep when our eyes close. As it relates to going to church, we're going to be clean, but we may not have on what the mama sent. It might be Superman, Spider Man, a ghost, whatever. But why not, outfit will be clean and the kid would be clean, face will be clean, hair will be combed, we're going to church, we're going to the mall, we're going to eat. The whole world will accept a three or four or five year old having on some character like outfit, so why couldn't Zetty show up in clothes, with the bathrobe on top and still be at church? Why would people have to look at her? Well, it's because they haven't seen it enough. So maybe it's up to us. Maybe that's a part of our activism as caregivers, as family members who are caregivers because we're different. We're very different than hired caregivers. We have the authority to decide when we want to push the envelope. There are times that my mother leaves the house or has visitors and her gray hair is exposed. That was very tough for me initially, I would forego events or activities because I thought Zetty would never go anywhere like this huh because we were unable to get her hair properly treated I would pass. Eventually I was like well, you know, she doesn't know this is a new normal sweetheart. You can't use old Zetty parameters with the new Zetty brain. But that was tough for me to digest. Hell she doesn't even realize that Jacos dead. Of course she doesn't know that she used to be mad about somebody seeing her hair gray. I really dig deep into the foundation of my hesitance. In Episode Seven, my body is falling apart, that's the title. That's when I discuss how poorly I handled the grief and denial of my mother having the disease. It happened so quickly and I was thrust into the role of caregiving that I didn't really allow myself to process and feel what was changing. I just strictly went into execution mode. Okay, we have doctor's appointments. We need equipment, we need medicine. We got to have this we got to have that. We got to move boom, done. Okay, but not done. Since I was not emotionally moving. Jay was stuck on old Zetty even though I was setting up a life around news Zetty's needs, emotionally, I was still very much tethered to old Zetty. Denial, I was in denial, which sounds totally nuts. J Smiles, how can you be in denial when you had literally uprooted your entire life caring for her because she had Alzheimer's? So how could you be in denial when you saw her every single day? The mind is powerful and just as powerful as Zetty's mind was boom. My brain was doing a totally different thing, my brain had shut off the emotional part of what was happening. Ultimately, I stopped beating myself up about it. I gave it to the universe and decided that a higher power knew what was best. You know what, I probably could not have really handled it all at that time. Just purely being in execution mode initially, was all I could absorb and that is the basis of what I told baby caregiver. Your new loved one will not remember the rules and regulations and preferences he or she wants hailed. If they only like to wear black shoes to church, it's okay if they wear sneakers now. Or maybe you just can't find the black shoes. Put on whatever shoes you can find. What part of the clothing will make you comfortable as the caregiver because they don't remember that kind of stuff anymore? To be clear, I am not suggesting that you throw the baby out with the bathwater. What do you mean J Smiles? I'm not saying to uproot and change all of your loved one's preferences and habits overnight, just because it's convenient for you. I am specifically saying that if your loved one has already changed a habit or started to let an age old activity slip through their fingers, don't you freak out, trying to hold on to it for them. Because now you're trying to hold on to the past and force it upon them. But that's for you to work out. That's where counseling comes in. And counseling can be in a ton of forms. You may speak with a therapist, licensed psychologist, a counselor, perhaps someone at your church, a clergy person, a clergy person that's funny to me. There are many Alzheimer's and dementia related support groups. The Alzheimer's Association has many resources, churches, hospitals, nursing homes, assisted living facilities, all have resources for caregiving support groups. ALZ.org, psychologytoday.com, and Alzheimers.net, there are at least 10 private Facebook groups for Alzheimer's or dementia related caregivers. Some are by gender, some are for men and women. Some are based on your maybe sorority affiliation, or what country you live in. It's pretty amazing. There are lots of opportunities to share what you're feeling, ask questions, get advice. The snuggle up- number one, embrace moments to spread all simas awareness through caregiving activism, if not you and who else will do it we're the best qualified. Number two, your loyalty to the first version, or the old version of your ello could be a sign of denial. Be honest with yourself, check in with yourself, talk to a professional if you need to. Number three, you don't have the time or the bandwidth to carry guilt associated with the fact that your new loved one happens to be stepping on the toes of your old loved one. Let them two battle it out on the inside and if the new ello is winning, so be it. To the victor goes the spoils. Number four, join me every Monday night for a video broadcast, a bodcast. It's a video podcast, it's all about caregiving, but a completely different topic than we have here. Same title Parenting Up in partnership with getvokal.com. Follow us on social media. Parenting Up has a presence on YouTube, Facebook and Instagram with unique caregiving content. 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.