J Smiles addresses the nightmare dilemma every caregiver faces sooner or later... whether or not to use 911 (or another emergency medical service). The decision is compounded by the dementia person's inability to communicate. J also touches on the elusive vasovagal syncope and Zetty's experience with it. As always, she uses love, levity and transparency to transport her listeners.
It was probably about 7:30pm. My mom just wasn't quite right or temperature was about 100.5 her blood pressure was slightly elevated for her 140 over 95 when I talked to her, she just was responding slowly. I say, Hey, xedi Hey, jG so she caught me by the right name, but she was saying it too slow. And when I touched her body, and I said, Does this hurt? She said uh huh. No matter what I touched that touched her shoulder. Uh huh. I touched her knee. Uh huh. Touched her stomach. Uh huh. Then I y'all touched the air. Just touch the air. Does this hurt? Uh huh. UHH, what am I supposed to do? Is that something happening? Should I call somebody? She can't tell me if something's really wrong or not, and the doctor is closed. Parenting of caregiving adventures with comedian J Smiles is the intense journey of unexpectedly being totally 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 in 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 911 to call or not to call? Hey, parenting up family. The 911 episode was delayed by a day as Zetty is recovering from COVID as she hits her stride back, so am I. My consistent panic. Anxiety is around whether these symptoms rise to the point of an emergency if it's after five o'clock, or if it's on a Friday, when the doctors close early on a Wednesday when the doctors are closed all together because they are doing their administrative paperwork day. How in the hell am I supposed to know if the symptoms that my mom is exhibiting is an emergency? Or is this just Alzheimer's? I don't know. I don't want to get it wrong. What if this is just something I was supposed to just chill and put up with? Or what if this is the big one? I'm coming to meet you, Elizabeth Fred G Sanford after 6pm any weekday is tricky because you're thinking okay, should I call 911 or should I just wait until the morning? But nothing is worse than the weekend because if it's Friday night and he like oh Lord, I got to wait all the way until Monday to be able to talk to her primary care physician. Uhh, and heaven smeavens. Don't let Monday be a holiday. Geez. Oh, Pete, what am I supposed to do? My mama cannot articulate what is hurting y'all. If I touch her stomach and say is that hurting? She goes, uh huh? Yep. Then if I put my finger in her mouth, but I touch her gum. Is that hurting? Mm hmm. Yep. Well, Hell, I mean, I know everything ain't hurt or is it? Maybe it is,0 I don't know. Is it a new issue? Is she coming up with some crazy gingivitis that has nothing to do with Alzheimer's but I need to hurry up and figure out what this is because remember she has mph and so she has the shunt in her brain which means we don't ever want an infection and she also has dental implants which is another metal thing in her head so I don't want some gingivitis that leads up to the thing in her head in her brain and now cuz of her tooth is having an issue now we got something going on in here that got a fungus. You got to give my mom a tooth fungus. There's now in her brain all because she couldn't tell me. Cause it's the weekend and I can't talk to the primary care. Woah, ya'll seriously is like playing taboo and Pictionary and heads up and charades all at the same time. You know being a caregiver for someone with dementia. In my case my mom having Alzheimer's is like you are being a pantomime. You are doing some quirky wacky version of playing out charades you're doing some version of sounds like I think she said okay, well last time she made that wincing face it was diarrhea. I wonder if it's diarrhea this time. So then I'm waiting. I'm sitting there waiting hoping to hear her eliminate gas but 5, 10, 20 minutes past if no gas comes, and if that same wincing face occurs, now I'm starting to freak out. Is this a new face that goes with a new symptom that's attached to some other underlying dementia thing? And who can I call? What is the hotline call for the symptoms of dementia? Yeah, they got the hotline call for caregivers, just so you can call and vent. I'm talking about, hey, do I need to call 911? Right, because I don't want to be the person that is calling 911. Every three days, I'm creating a bottleneck to the system. Because Did y'all know that Alzheimer's is the most expensive disease in the United States seriously. It's awful between the cost of the medications, the cost of hospitalizations, and then the cost of family members like myself, who then are taking off of work or under employed because they are managing caregiving responsibilities with work life, and the amount of time that we end up calling 911 and going to the ER, because we don't know right? When in doubt, we air on the side of caution. And we just call 911 because our loved one cannot say hey, is just gas, I just got diarrhea, or I'm just constipated or is just a headache. Give me some Tylenol, out of panic, you go to the ER. So the cost to our overall healthcare system is tremendous. So Alzheimer's costs more than cancer. Did y'all know that? We don't have a cure. Anyway, that's another whole episode. Right now, I'm talking about the panic and the total anxiety that we have as caregivers because yeah, if my mama falls, and I see blood coming out her nose, of course, call 911 if she's choking, and her face turns purple, of course, call 911 but y'all just like with most of life, it is rare day to day that the stuff that comes in front of a caregiver is that black and white. We are typically faced with these Blurred Lines this gray area of Hmm, Is this enough of an emergency or could you sleep it off? Like my granddad would say could she shake it off. Could a nap and a nectarine knock it out? Hell, I don't know. Does she need novocaine? I don't know. Most of the time, we don't know. One thing that I have started doing is keeping a journal of the times when I take my mom to the ER like what actually occurred JG, what did you observe? or What did the caregivers observe that made you say, Okay, this time we are going to the ER. Now listen, I know there's some people that are about it with journals, and they actually write down every medication and the blood pressure and cholesterol and all of that every hour on the hour, y'all I ain't that good. I ain't that nice with mine. I ain't gonna even lie. I write down the peaks and the valleys. Whatever made me freak out enough or made the caregiver freak out enough to call 911, I write that down like what was her blood pressure? Or her temperature? Or how was she acting that made us call 911? And then when the EMTs got there, what readings did they get? And did they think we should take her to be admitted to the ER right? Why shouldn't say admitted to the ER, should we take her to the ER though sometimes I call 911 and actually they get here and if her vitals and her alertness start to improve in 10 or 15 minutes while they're here, I will say OK, we will pass we won't bother to go to the hospital. There are other times EMTs are here and they're like yo J Smiles, we got to strap your mama, go ahead. That didn't sound right. We go put your mom on the gurney, secure her to the bed, and then we're going to transport her to the hospital. But all of that is a plan and a strategy that you kind of got to have right in your mind and you're already dealing with anxiety and panic because your loved one is distressed. You're scared. Are they okay? Are they going to be okay? Is this something that is potentially fatal? Or is this something that we can catch? The domino effect is so big is so crazy anywho I try to keep those kind of things in a journal what the EMTs have said that led me to decide; Yes, we're going to go ahead and transport to the hospital or no, we're going to keep her at home and observe her. Also. I absolutely have a blood pressure cuff. I have the oxygen pulse reader and I have a non contact temperature gauge and I'll put all of this in the show notes of what I have the things that I have at home. So being able to read the blood pressure, the temperature and the oxygen have given me a great sense of comfort in knowing Okay, wait, is this any immediate 911, we're going right to the hospital? Or is this a we're gonna call 911 chat with the EMTs and see what they think or am I going to pause and not even call 911 yet because depending on what my home equipment is telling me Right, well it goes like this. If I have those three things, the blood pressure, the temperature and her oxygen if all three are jacked up, we are going 911. Hurry up chicken the sky is fallen and we are going right to the emergency room. But if only one of the three is jacked up, then I'm probably going to observe her very closely and by closely I mean I am sitting right by baby girl side and watching her like a hawk. If two of the three are jacked up, I am definitely calling 911 and then I am going to do my best to get in touch with her primary care physician and/or her neurologist or as y'all have also come to know Dr. Sandy. Dr. Sandy gets a page at any time or the day at night just because and then also my primary care physician who also happens to be my life Sister, I will just call her to ask her general medicine questions around how bad do I freak out? Now the thing is, I don't ever transport my mom myself to the ER we are past that because of her ailments because she has Alzheimer's because she cannot communicate what's happening because there's no way for me to tell if her blood pressure is dropping or if her oxygen is tanking. I need her in a vehicle that is where she is hooked up to some machines where they can start giving us some oxygen or some immediately let's say if you know if there's a traffic jam. Also, they could put the little swirly lights on and started making them fancy and noises that should make people get out the way out. Okay, I'll take a pause. All right, I'm Southern right and I have heard over and over again so many of my friends from the North, Midwest, and West Coast; they come down south they have commented and complimented the southern culture for how we pull to the side if there's a hearse or what appears to be a funeral procession we will damn near have a wreck trying to get out the way until every hearse every car anybody with their headlights on we let them pass. But yeah, what if there is an ambulance or a fire truck? Why we don't get out the way so we we respect the dead but we don't give a damn about the living y'all come on. It's still had nothing to do with the podcast topic necessarily. But J Smiles wants to say Yo potentially okay, if we would get our behinds out of the way for the ambulance and the EMTs and the fire trucks maybe maybe just maybe we wouldn't even have quite as many funeral processions okay to have to show our respect for. Lord have mercy people we respect the dead and turn our nose up to living in who I digress, which I'm sure you all are getting accustomed to by this point. But when you're deciding whether or not to call 911 that thing is tricky. I have found it is very beneficial to have that journal of something to refer to and to have a set of suggestions from the primary care physician someone who knows my mother very well to say okay for my mom, what vital signs for her are a big deal and what should make me very worried. For instance, y'all I had a full freak out like I thought my I thought I was losing my mom. I thought my mom was having a stroke. Okay, this is a time where I absolutely call 911 and while 911 was coming I call my best friends and said y'all go have to come get me up off the floor because it looked like that Zetty was having a stroke. She was slumped he was on the toilet. She was slumped over. She was losing all the color. She was turning blue. Her mouth was drooped open. It was very scary. This was a few months back, obviously she made it through I want y'all to know that part turned out she was having an episode called vasovagal syncope. Again, I'll have in the show notes. As it turns out, it is a condition where the doctors have no idea what brings it about thanks. But basically the brain and the heart aren't talking well together. It happens mostly in the elderly and mostly when they are sitting on the commode. The thoughts Is that potentially they're straining to have a bowel movement. At some point, the brain is not communicating fast enough to the heart for the heart to pump a little more blood because we're about to do something strenuous. And so then what appears to be a fainting spell kind of pops up out of nowhere, y'all to me, she was just sitting there talking fine, and then like, boom she wasnt fine and she was out. And when I called her name, she didn't respond. It was awful. So I'm telling y'all right now you're not aware of with the vasovagal syncope, at least ask your primary care physician for your loved one who has any form of dementia. Ask them about it. Ask them what the signs would be for me after my mom had it the first time I then asked her primary care physician to talk me through what else it could look like. And then I called her neurologist and said, Hey, listen here since this comes from the brain not talking to the heart, right? Go ahead and tell me how y'all see could look guess what y'all it can also happen if they stand up too fast. I'm like, Lord have mercy. Hell, if she if it could happen from trying to have a number two and stand it up too fast. Are you kidding me? This vasovagal thing Okay, hello. Ah, the point is now that I understand the vasovagal syncope, I do not call 911 when I see that thing happen, but this is the trick. And this is the trick that the doctor told me of how I can know to avoid the 911. If she has a fever, then that ain't vasovagal syncope, there's something else going on and I do need to call 911. But the vasovagal syncope, it could absolutely be a change in her blood pressure and a change in her responsiveness. Right. So she won't talk to me, she could look very lethargic, her eyes might be droopy, or head maybe slumped over now it shouldn't last very long, you know, five to seven minutes, she ought to start coming back. And she shouldn't be out to the point where she's not talking or responding at all. Now that I have the specifics of what the vasovagal should be, I can check off according to my little journal, I can look at it. I could take up blood pressure. I talked to her the entire time. So when it starts happening, like Hey, hey, Zetty. Hey, and she's like, Hey, uh huh. Uh huh. And y'all look her saying? Uh huh. According to the doctor is good enough, right? She don't have to give me a whole sentence like supercalifragilistic expialidocious, she ain't got to do all that right, she only got to give me a SAT word. She just has to respond to me. That just means that she hears me and she is coherent enough to respond. Alright, so I put my little oxygen thing on her boom, and I do a little blood pressure and it ought to start coming back around, you know, five to seven minutes or so I ought to see her. The color coming back in her skin, her eyes starting to brighten back up. Listen, y'all, I am trying to reduce the number of times I call 911. First of all, it is shocking to my mother,these nurses and these techs don't know how to deal with dementia patients period in the story unless you are fortunate enough to be going to a hospital and they get assigned to a floor that specializes in Alzheimer's or neurological brain diseases. Otherwise, you and your loved one, you're screwed. I'm sorry. I'm sorry to say it. Listen, the number of times I'm gonna do a whole episode maybe 12 episodes on this. The number of times I have had to explain to nurses, aides, and doctors. Hey, she has Alzheimer's and she does not respond to verbal cues. Yo, I'm like, Oh my goodness, I am in a hospital and I am telling you she has Alzheimer's. And y'all don't know what that means. You know, when they do they start talking with a sweeter voice. As if as if Alzheimer's just means that you got to be nice. Almost cussed I wish it was that simple. I wish Alzheimer's just meant Don't be mean to people. Wouldn't that be great? Anyway, so a big thing for me is number one. Now 911 is a joke in your town. Get up, get up, get down. All right, shout out to public enemy. First and foremost, I don't want to call 911. If it's unnecessary, because there are people who are dying. They are really dying in resources in any city in the United States, any city in the world. They are strained. Another thing is I don't want my mother going through the drama and trauma of being poked and prodded, being in these new environments. All of that is very disturbing to her system. All these likes all these new faces drawing blood, all of that hurts, it hurts her body. It hurts her sensibilities is awful. So I'm trying to avoid it the best I can. But when I do call 911 let me tell you this I already have a bag ready. I have mom's insurance card. I have her ID ready. I have all of her medicines are in a huge ziplock bag. I don't even bother trying to remember all that or spill all that stuff. I just take the whole bag of medicine with us to the ER. I have my own little overnight bag. It has my phone charger, my own medicine, a pair of socks, a hat, some loose sweatpants, a long sleeve shirt it's always too cold in hospital for me dress in layers, people like going on an airplane, have me a hoodie with a zip up. I'm Catholic, make sure I have a rosary, my eyeglasses, her eye glasses, like some lip balm, some hand sanitizer, some lotion, something to read, which for me means my phone charger, because whatever I'm reading is an audible book. In my earbuds, you know what else people know if you call 911 you got to go until you go into hospital. Know what hospital you prefer to go to 911 has to go wherever you want to go, right? You may live in a smaller city where there's only one hospital, but you get to choose the hospital you want to go to so potentially, maybe you want to go to the hospital where your primary care provider is attached or works with or maybe you don't but know that kind of stuff in advance. So once you do a call 911 you're not also trying to figure out the administrative details on insurance card, where's the bag of medicine? Which hospital do you want to go to go ahead and figure that stuff out before there's a crisis. You know, I'm saying if you listen to this podcast, you're already in a bit of what I'm gonna call a life crisis. Because you are a caregiver, you either are a caregiver, or you are supporting a caregiver, which means life has handed you an opportunity to sharpen your crisis management skills. I'm just sharing with you a little bit of how I have tried to manage this 911 to call or not to call. Lord have mercy. It is such a stressor. I look forward to hearing some of your comments around how you manage it. Maybe it's just me, maybe you all manage it better than I do, but I freak out. Should I be calling 911? Or should I not? Obviously, this really only happens after 5pm and on the weekends. Other than that I call my mom's primary care. And I say hey, what's this sound like to you? Should I bring my mom to you or should I call 911? I totally am fine with doing whatever the doctor says, this pops off when the doctor is technically a little bit unavailable ish. And I mean, my mom is my responsibility, her physical health, her medical well being when new things pop up, whether it is obvious to me or not what it is, I try to jump on it, see what it is figure it out and communicated to her medical team. But sometimes this stuff is a wakey noodle. And I mean it's a red herring and I'm like, Oh, it's just a test is a test trying to figure out if I'm on my game. It is stressing me out more times than I could count. The bottom line is, when in doubt, go ahead and call 911 it's better be safe than sorry. The snuggle up charades learnin your best version o interpreting your loved one signs, signals, gestures, facia expressions. When are the communicating pain, displeasure happiness, joy, sadness, I gott go to bathroom, I'm hungry, I' sleepy. They can't rely o verbal cues anymore. Anothe snuggle up have the equipment t take the vital signs yourself lood pressure, temperature, ox If your loved one is diabetic, you need to be able to read the sugar to. Another snuggle up we still don't have a cure for Alzheimer's. Let's beat it. We need research. We need dollars. I am partnering with the Alzheimer's Association. Every single dollar goes right to them. It will be the link in the show notes or you can go to my website, single letter Jsmilescomedy.com. There's a tab called podcast. Another snuggle up if in fact you need to go call 911 people go ahead and do it. Don't play around with your loved ones life on some I think maybe maybe just wait to see and be prepared. If you listen to this podcast life is already tricky have the medicine list or the ziplock bag to me in the ziplock bag, already prepared the small duffel bag already prepared of clothes, essentials, toiletries for yourself, and your loved one. Calling 911 is tricky enough. It's emotional enough. You don't need to be running around looking for deodorant and dentures.That's it for now. Thank you for listening. Please subscribe for continuous caregiving tips tricks, trends and true. 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