Caregiver, Caree, Badazz: Jen Hardy

J Smiles is joined by  Jen Hardy, an experienced caregiver, and Alzheimer's awareness advocate, who shares the triumphs and struggles of her unique caregiving experiences. Who knew that saying "no" could be such a powerful tool in creating a better future for those in need? From her aunt and grandma battling cancer, her father's depression and renal failure, to her husband's illness, Jen's resilience and commitment are truly inspiring.

What if you were told you wouldn't live past a year? How would you respond? For Jen, it was a call to action. She channeled her purpose and determination to beat the odds and inspire those around her -- podcasts and books. Her books, The Sick Moms Guide to Having Fun Again and her five-year journal, are tools that can help navigate tough times and emphasize the importance of finding joy in challenging circumstances.

Jen also shares how she navigated her way through various medical challenges and how she managed to take control of her life by changing her mindset. We discuss the importance of self-care for caregivers and share some practical tips and advice for those on a similar journey. In the world of caregiving, simple gestures can have a profound impact, and Jen's wisdom on how to keep our promises to our loved ones and rely on our support networks when needed, is invaluable. Get ready to be enlightened and empowered with this in-depth conversation.

Jen Hardy's Website:
https://jenhardy.net

"Alzheimer's is heavy but we ain't gotta be!"
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Transcript

J Smiles: 0:00

She was a caregiver before she could drive a car, maybe even before she had a training.

J Smiles: 0:09

Bra Look at me, I got bars. I didn't even mean to make that be a hip-hop lyric, all that goodness you get over here on the parenting up podcast, anywho. Then She has kids. Some of them can care for themselves, but a couple of them she has to be their caregiver. She's caregiver for parents in laws. Slap it, flip it, rub it down. Oh no, that's a reference to the new addition spin-off group BBD Belle Biv DeVaux. New Edition, famous member, bobby Brown was married to Whitney Houston. You all should look it up, thank me later. Then she's the carry. Can you imagine this? You're a caregiver. Then you're the carry.

J Smiles: 1:12

The doctors come in and tell her to her face girl, you're not gonna live more than a couple of more minutes, days, months, whatever. So hug everybody quick. And then, anyway, she was like y'all can kiss my with a son. Don't shine. Kiss my grit smell. Shout out to flow. Real long time ago. I'm a sick comma fish, you're not. Oh, the show was called Alice. She looked at them fools and said your little white coat Ain't bigger than my white, hot flame desire to live. Hello, okay, y'all better put your ears on, okay, started clapping and snapping your eyeballs. Get ready, get your popcorn.

J Smiles: 2:01

This is about to be a fire episode. Parenting of character in 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 a heartbeat. This stuff is so heavy caregiving newbies, ogs, village members trying to just prop up a caregiver. You are in the right place. Hi, this is today. I hope you enjoy my daughter's Podcast.

J Smiles: 2:49

Okay, today's episode, caregiver, carry bad ass. A conversation with Jen Hardy. Our global community is expanding. I Want your feedback. Let's nuggle up. Send a purple heart, the little emoji to plus one 404737, 1449, highlighting dimensions of somebody's time Parenting up family. Do I have a surprise for you? Today's guest is a That's right with an S on it and books with an S on it. She's been a care E and a caregiver. You know what I mean. She knows both sides of the coin. Hell, i don't even really know that. I'm about to be a learner and a learning. Let's put our ears together and welcome Jen. Hey, jen.

Jen Hardy: 4:10

Hey, it's so great to be here. Thank you so much.

J Smiles: 4:14

And are you getting some sunshine down there in Florida?

Jen Hardy: 4:17

I am getting a heck of a lot of sunshine. Florida is getting hot Yeah.

J Smiles: 4:22

Thank you so much. When my team told me all of the things that you have accomplished in the world of caring and loving on family members and sharing, i thought this is a no-brainer. There's often where we are contacted with people who have a great fascination around caregiving, dementia, things of that nature, but they're not really a fit And I don't really like saying no. I'm not good at no, but if it's not a fit for my global community at large, then I feel it's my duty to say no, just to keep the brand and the momentum of what we're building pure. But you have so many things going on. I would like you to start. I don't. Ok, let me say this.

J Smiles: 5:17

She has two children that she's currently a caregiver for. She has previously cared for both of her parents. They are now angels. Her husband over the last few years, more recently, has an illness that requires her to have some to be his caregiver. Well, there's some other stuff sprinkled in there where Jen needed him to care for her previously And they even thought she was going to die. Y'all, jen, they didn't even supposed to be here. Ok, jen, is some part of your Marvel or DC comics And listen whatever side you want to be on the point is, the chick has some - She might not even have real blood. All right, if we were to cut her arm, we don't know. Maybe she's from Wakanda, maybe she's a white Wakanda and you, hey, could be dead. But what was the first time you were in the role of care? Tell us about that.

Jen Hardy: 6:25

So the first time. So, unfortunately, I've lost a lot of people in my life. So my, my aunt, my great aunt, was the only family that I had. Out in California I have 28 cousins and 15 aunts and uncles and all kinds of people, but out in LA, where I was raised, i had one aunt and she had cancer.

Jen Hardy: 6:43

When I was 14, i want to say, and so I helped take care of her because she just had my parents and me And so that was. That was hard, i didn't like it, i'm going to be honest. But I learned the most valuable lesson from that And I will and I'll never forget, and actually I'm going to, i'm going to tear up. But my aunt, we knew she was dying, she had breast cancer and metastasized. And there was one day and I did not want to go to see her, i just didn't. I was like you know what? I'm a kid, forget this, i'm over this, i don't want to do it, and that's the day she died. And so I never got to say goodbye. And so I learned from that that even though we might not want to take care of somebody, we might not feel like seeing them, if they've got an illness like that we've got to do it. You got to step up and make the visit. It was a 30 minute visit And that's stayed with me for my whole life I would say haunted except that I know that she understood right And I and I learned from it. So I moved on.

Jen Hardy: 7:49

And then my grandma got sick when I was 16, helped with her a little bit. She was in Illinois, though, so when we went out there we'd take care of her. And then, when I was in my early 20s, my dad was very sick. He had renal failure and emphysema And he didn't have much of a will to live, and so he drank himself to death over the course of six months, and so taking care of that situation was really hard. He, yeah, okay.

J Smiles: 8:18

So my, my heart is real heavy Right now because you you, I knew you had a lot of experience, but you're running these off pretty swiftly before you could drive a car. I mean you're saying like you'd stand these early teen years and now you're getting to your father and not having the will to live, And then you see him potentially speed up his life span by maybe a year, um, maybe a heavier level of drinking, or at least just not pausing. And had he been a heavy drinker before, that maybe caused some of these problems, or do you think he did? he actually ratchet it up some?

Jen Hardy: 9:07

So he had been an alcoholic and then, a year before he died, he got sober. But then he saw what had been happening around him, that he had kind of been tuning out because he was drinking, and it made him really more depressed. So he also he also suffered from massive depression, which was this was back in the early nineties, and that was not something that someone in their fifties wanted to admit. You know, he's like I'm a man, i can do this Right, i don't need help to tell me I need help. Um, yeah, it was, it was, it was rough, it was really rough.

Jen Hardy: 9:43

And so what had happened was he only had one functioning kidney and they did a biopsy. It was a HMO. I actually worked for them. They are no longer in business, uh, yeah, because they, they were more about money than healthcare and, um, they did a biopsy on his good kidney and they missed the fact that it wasn't working properly, and so by the time they realized they had overlooked that he was on dialysis. So he was that, which did not help with his uh, sprain of mind, because that's hard, that's a hard thing to go through. And so I think at that point he just thought well, you know what, if I've got to go through all this, I'm just going to drink alcohol and not feel it. But unfortunately that shortened his lifespan by a life.

J Smiles: 10:32

And you, as a teenager you are, you were still living in the house where he was? JEN: So well, actually, I was 23 at that point.

Jen Hardy: 10:41

So I was living separate from him. Um, but he and my mom didn't really get along at all. So, even though I didn't live there, i was his caregiver because he was on a bed. He was on a hospital bed in the living room, but completely responsible for himself. So I had a. I was a single mom with a three year old and so I worked. But when I wasn't working I would go over there. I'd get out of work at 11 at night and I would go to work at 11 at night And I worked at a hospital, so I had my scrubs and everything on. I was at EMT at the time and I would pick up my daughter from her childcare at 11 30 at night. We'd go to the hospital when he was in the hospital, take care of him, get him what he needed, and then, when he was home, we'd, yeah, take care of him around my work.

J Smiles: 11:24

Wow, wow, doing this time, this time were you. how were you managing mentally?

Jen Hardy: 11:39

I was not managing. Well, I'll be honest, I was not, it was, he was. You know, we I had had a pretty rough childhood. My, my parents were both alcoholics and there was a lot of stuff And uh. but when he got sober, we he apologized and we found peace and he became my best friend during that time And it was beautiful And I'm so thankful that we had that time. Um, but it was very hard. And when I lost him, oh my goodness, Well, and the other thing was with him and this is something, if you're listening, I think this is so important If someone has a DNR, they have a do not resuscitate order. Honor that. Honor that, Because what happened was the person who called 911 did not honor that. And at 23, I had to call the code on my dad. Why did they make me do it? I don't know, but I ended up being the one to say, okay, this is it, You're done working on him, And I think that was very hard.

J Smiles: 12:46

He was in a facility that did not honor the do not resuscitate, oh correct, oh, my goodness. Okay, so for those who are listening because we have listeners all over the globe, which we're very proud of here at the parenting up, family and different countries may use different terminology, but in the United States, do not resuscitate is a legal term that you can have written up. We would normally have it in our living wills or advanced directives. It's the two most common words that we would use in our documentation that, basically, if a person is under any type of medical distress and is not able to communicate their personal wishes at the time, if there needs to be medical intervening, something like oxygen or you know the big metal shock pass, are you trying to bring them back, bring their hearts back. Or you know when you have to get on the chest cavity and you're pumping, do not resuscitate means if it looks like my vitals are going down, do not attempt to save me.

J Smiles: 14:13

And so what Jen is sharing with us is her father's wish was to just let him his body go peacefully whenever it started, but the hospital didn't do that, which is again, i guess, why this place is out of business. But for you at 23 to have to Ammets that. And so for those of you who've never been there, never seen it, because unfortunately I've kind of had to see it It is very chaotic and it's a lot of motion happening, a lot of movement with a variety of hospital personnel, and it is traumatic. And then for them to have to ask you what Well you need to tell us to stop, otherwise we're going to keep doing it. And if bodies are older and frail and fragile, it's gut wrenchy.

Jen Hardy: 15:09

Yeah, it was. it was definitely not what he wanted, okay.

J Smiles: 15:14

Yeah, So that was your father and you're 23. And you're a single mom and you have one kid. But that child is is healthy. The child is healthy.

Jen Hardy: 15:30

Yeah, yeah, all my older five are all great. And then by the time I fast forward to when I was 30, 30 ish, 29 ish, 30, i guess I had my. Maybe I was a little older, i guess I was 32. I had my four children at that point and I was caring for my mother-in-law as she was dying, so I wasn't in the room with her, but, we care, i cared for her all the way up until the end as well. What?

J Smiles: 16:03

was her disease or illness.

Jen Hardy: 16:06

So well, you know, she, she was older, she was in her mid-70s, her husband had passed and she was so connected Like she knew the month he died she would die, but what happened was she didn't, and so she had been bedridden for like 20 or 25 years before then, just kind of waiting because, yeah, they, they had had a glamorous Hollywood whatever back in the 50s, and then that kind of faded away. And it's, it's hard when you're used to one thing and things are different. And anyway. And so I you know there was the alcohol was involved in that as well. They were both alcoholics. And so I remember I took her to the doctor and the doctor said you know, her liver is gone, it's gone. One more drink. We don't know which drink it's going to be, but there's going to be one and that's going to be it. And so I refused to give her alcohol. And boy did everybody get mad. But so everyone else gave her the alcohol. But I just did not want to be the one to give her the last drink, cause you know I'd been there, done that, i didn't want to do it again. So I took care of her And then and you know that was, it was hard.

Jen Hardy: 17:10

It wasn't quite the same, though. My dad was only 53 when he passed. You know he wasn't. You know, at that point she was at the point where she was ready, and I think there's such a difference in the person being ready. You know it's coming as a family is prepared to. Oh my goodness, you know this is we're still trying to fight this. It's too early and then they're gone.

J Smiles: 17:32

When you said she was had been bedridden for 20, 25 years, did she? was it a natural decline in her becoming bedridden, or did she have a stroke? or did any of her? did her limbs still work?

Jen Hardy: 17:48

Yeah, i think it was more of a choice, to be quite honest, she could get up and walk to the living room and watch television and then get up and go back to bed, but that is all she did. So, yeah, so if with her it was more, you know, was she very depressed in the hindsight? Probably had a lot to do with it, but yeah, she just wanted to be with her husband at the end.

J Smiles: 18:13

Her love of her life was gone. And then the lifestyle. When you speak of a glamorous Hollywood movie star style life, I at least am aware of what that was and what it could be, And the access that came along with that glamour, the invitations, the lifestyle that you can't mimic it anywhere.

Jen Hardy: 18:47

Right, well, you know she used to sing, her husband played music and Frank Sinatra actually watched their daughter backstage once at a show, like that's how that's the circle they were in, yes, and she held their daughter, and so to go from that, you know it was a hard change, yeah.

J Smiles: 19:09

And where else do you want to go? To be quite honest, if that's the circle that you were in and as your contemporaries meet their maker, where else do you want to go? Like, i mean, if you know, if you, if that's the rare far and air you were living in, even when other people want to invite you over, what do you want to go? You know you can't just eat pizza and watch the prices right when you've been flying across the world with the likes of Frank Sinatra and whoever else. It's just it doesn't quite match up. So you might as well just stay home and watch TV and get back in the bed. I mean, i'm not trying to be a passe here, but I kind of understand. It's like I've seen and done so many cool things that everything you all are suggesting right now is a little bit beneath my taste buds. Yeah, yeah, so anyway. But but you stepped in and you cared for her and assisted in monitoring. So was it a lot of monitoring what the caregivers who were coming into her house, what they were doing?

Jen Hardy: 20:23

Oh no, it was just her family that she lived with on me She didn't have, we were it.

J Smiles: 20:29

Oh, it was you Okay.

Jen Hardy: 20:30

So we, yeah, monitoring that And so, yeah, you know, and as someone who's been ill, you know I had I have a disease called myestinia agrabus and I kept Okay.

J Smiles: 20:45

You can't say that fast. That was way too fast.

Jen Hardy: 20:51

So I have a rare disease that affects my muscles and my breathing Sorry, that's making me cough, okay And I also have muscular dystrophy. Those two usually don't go together. That also affects my breathing, and so I spent in 2014. I had seven kids at that point And could not they could not keep me out of the hospital. I'd spend a weekend, go back home for a few weeks, spend a weekend, and they didn't think I'd make it, and so, and then in two, and I did a little better, and then in 2018, i wasn't doing well And they're like okay, that's it, we're just going to keep you comfortable. You're not going to be here past for another year, but it's 2023 now and I'm here.

Jen Hardy: 21:33

So I think when I look back at my dad and I look back at my mother-in-law and I and I see my mother-in-law And I see the choices that they made to give up, i think It saddens me because, as someone who was told I wasn't going to make it, i think you know we have a choice. We have a choice in not if we're going to live or die. Let's be honest. I mean, if that was a choice, no one would ever then that's not a thing. But we have a choice in how we're going to spend our time and we have a choice in what we're going to do with that time. And for me, i thought okay, how can I live every day? the best right, not live every day like it's my last, because that's depressing, it's fire, But live every day the best I can live it And that's actually something that I try to talk about in my podcast is that it doesn't matter if you're all the way in hospice.

Jen Hardy: 22:30

There is always something that you can be doing, and it's a lot of times when you're not well, when you're having something serious, you can contribute to other people. You can give them a call, you can send them a text, you can say the thing that you know they need to hear that other people aren't saying, if nothing else, i feel like that's a pretty big thing to do. So people that feel like, well, i'm not well, i don't have anything to contribute, you absolutely do, because I guarantee there's at least 10 people that you know that need to hear something positive from someone today and need to hear that they matter today, and you can give that to that person. And so that's what I try to do every day is do something for other people And it helps. It helps take the focus on me, it helps take the focus off my symptoms, you know, and all the negative energy, and just makes it positive.

Jen Hardy: 23:29

And so that's a message I really want to share with people because I think it's so important, especially when you're given a terminal diagnosis. You know you have X amount of time and a lot and a lot of people do give up, you know. But if you can't go hold on for yourself, hold on for other people, like, do for others what you want done for you. It's just so important.

J Smiles: 23:53

I love that you're walking us through your disease, your symptoms or how you found out about it, or what, or what do you? what are the medical, what is the medical community attributing to why you're still here?

Jen Hardy: 24:14

Yeah, they have no idea.

J Smiles: 24:17

What were the symptoms that led to know okay, i need to go to the doctor myself now.

Jen Hardy: 24:24

Yeah, so I, you know, all through my life I had a bunch of things. I was always tired, i had whatever. And well it turns out we didn't find out till I was 40 that I have asthma. I have a pretty significant asthma. People used to just tell me I was lazy, but I didn't want to run. I said I was having pain and my chest was burning, my lungs were on fire. I felt like you just don't want to. Well, it turned out at 40. The doctors, like how did you not know this? this is crazy.

Jen Hardy: 24:48

When I did my pulmonary function test And then things just kept getting worse. I kept getting more and more tired. We couldn't figure it out. I was having it. I was losing muscle, like I was losing strength. We didn't know at the time I was losing muscle And so we did a series of tests and let me tell you some of them are pretty archaic, medieval torture, like putting electrified needles around your eye sockets to see if the nerves respond. That's horrifyingly painful. It's a microfiber EMG. I've had that around both of my eyes, up my arms, and then I had the EMG up all one side of.

J Smiles: 25:25

Whoa, whoa, whoa, whoa, whoa whoa. That sounds like some type of waterboarding type torture.

Jen Hardy: 25:32

Right, yeah, and you can't get, you can't numb it, because then your nerves don't respond properly. So you have to completely feel. So, yeah, they put a little needle just under your skin and then shock it to see what nerves respond to what nerves don't. Yeah, and that's the fun way of finding out that you have myostinia grabus, which just means grave muscle weakness. That's what that means. And so if I'm really stressed or I get sick or whatever it could it's kind of a random thing it can kick in, and then I have a hard time breathing And so, and then I have muscular dystrophy that is literally wasting away my muscles, and so my diaphragm only works at 20%. So that's the muscle that you know makes you breathe. And so actually I have a bypass that I that I hook up to. So a CPAP is what people have with What is it called sleep apnea?

Jen Hardy: 26:22

right, it's constant pressure, it blows, it keeps your airway open. A lot of people have it, no big whoop, but what I have is a bypass and it actually it's a noninvasive ventilator, is what it is. So it breathes in and out for me. So I put that on at night, i sleep with it. I say, keep it on for eight or nine hours and it literally does all the breathing for me to give my lungs a break so that they can keep working during the day. It's intense.

J Smiles: 26:52

Thank goodness that the hospital that missed your father's kidney was not in charge of this. Thank goodness for that. Yeah, today's sponsor is Jace mouse comedy fresh curated content for corporations, clubs or keynotes live and virtual performances. Jace mouse comedycom. You also have two podcast. one is dealing with 50 and fabulous and shiny things and helping chicks be their best selves. Tell us about that.

Jen Hardy: 27:41

So well. So when I got sick, i ended up starting a podcast. It was Hardy mom and it's for moms with chronic illness. For eight years I did stuff for moms with chronic illness, but then in January I realized, oh my goodness, i just keep introducing myself as a sick person And by doing that it's making me focus on being sick and my symptoms and I've had enough of that. I just I love helping the women And I want to help women, but I cannot anymore, don't want to think about being sick. I want to think about being great and fabulous.

Jen Hardy: 28:10

And so I was at a podcasting conference and I was looking around thinking I love podcasting. What can I do for these podcasting women specifically? because I feel like men they take care of, they got taken care of, i don't know, because there's so many men that podcast and not a lot of women. And then I thought, oh my gosh, there's not a lot of things for women podcasters over 50. And so I thought fabulous, over 50, that's. It actually got a. People were standing and cheering and it was a thing And I thought, okay, that's what I'm doing. So it's not just for podcasting women, it's for every woman who's over 50 who is tired of hearing your old, your worthless, you don't matter all those negative things we hear and seeing those, you know, 18 year olds on Instagram. That looks so whatever, and you know it makes us feel bad.

Jen Hardy: 28:54

And so I thought we need to rock being over 50, we need to feel fabulous, and it doesn't mean you have a lot of jewelry or you live in a mansion. It's not that kind of fabulous. It's in you, right. What is fabulous to you And like for me, it's ridiculously glittery nail polish and you know all this stuff. But yeah, there you go, you've got it too on your nails. I love it, you know, and I feel like I wouldn't have ever done that in my twenties or thirties.

Jen Hardy: 29:20

But now I'm like I don't care what other people think. I'm finally me. I have the freedom to be me, i think, because I don't I don't know, i don't feel like I have to conform anymore. I can just be myself and I want to encourage other women to do the same thing. And, like I said before, you might be, you might be 80 or 90, but that doesn't mean you can't start something new. You can still start a new project, you can start a podcast, you can start a YouTube channel. You can, you know you could do whatever you want, and I think we need encouragement to do that.

J Smiles: 29:51

Fantastic, the second podcast, medical gaslighting. First of all, talk to us about gaslighting. that word, that term, is fairly new. it gets thrown all around. It has nothing to do with gasoline and how you run the lawnmower or your car.

Jen Hardy: 30:23

That's right. So you know, medical gaslighting is a little different than traditional gaslighting And in traditional gaslighting people are trying to mess with your head. They are trying, you know, it's from a movie where the guy was taking the gas lamp and he would adjust it and then tell the girl he didn't and made her think she was going crazy. Long story short, that's what it was. But with medical gaslighting it's more things like this. It does tend to happen more with women, people of color.

Jen Hardy: 30:48

Oh my goodness, i could tell you stories but, which is why I have a podcast. But basically it's when doctors come in and specifically a lot of times I know, if I don't have my husband with me and I talk about pain, the doctors think I'm just being a hysterical woman. But when my husband's there, they're willing to treat the pain. Why? That's part of the gaslighting? It's when they push aside your symptoms, they push aside what you're saying, or they'll say something like oh honey, there's nothing wrong with you, you're just depressed, but then refuse to treat depression. So if you think that's what it is, then help me with that, because obviously it's so bad. I'm saying I can't move, you know, and you're telling me to go home and take a Tylenol.

J Smiles: 31:27

And it's so bad I'm in the doctor's office. Listen, i don't have time to go to the doctor's office. I'm a freaking caregiver, and if people really understood what that meant, i'm a caregiver to my mother who has Alzheimer's And I have taken the time to make the appointment. Get in the car and come here and fight through traffic in Atlanta OMG, if anyone understands what that means. And then sitting here in your lobby and wait because y'all aren't on time either. And now I'm in here on this cold table trying to tell you these things. And, sir or ma'am, whomever you don't want to believe me, specifically, when it's a guy doctor, it's a little more gas lighting going on. I hate it. Thank you for addressing it. Keep going. I just had to give my little bit of testivity.

Jen Hardy: 32:26

Yeah, it is, it's awful. And so, as I was doing this podcast because before you know I was talking to people with health issues and just story after story And I thought, okay, this needs to be its own show, we need to educate people. And so when I told a friend of mine I was doing it and she said, yeah, but what's the second half going to be about? I said what do you know? it's the second half going to be about? She said, well, you just can't drop these bombs on people and walk away. And so I thought, but it is depressing And that's really what I want to share.

Jen Hardy: 32:51

But we do, we share the story, but then they also share what did they learn from it? because we learn something from everything, right, especially, you know negative things. And then they get to give their advice to patients on how to be a better patient. Not that it's ever their fault I don't ever want to blame the patient But if we all are more informed about how to be the best patients we can be, then we can get the best care. So we start with the issue and then we talk about that. So you learn a little something and you hear an interesting story.

J Smiles: 33:22

Do you have a story or a learning? maybe a patient advocacy tip or a short story on something that didn't go so well, and then a patient who learned something that you can give us today?

Jen Hardy: 33:40

Oh, my goodness, Yes, so one of the ones we just have there's just four stories up right now because we're working on recruiting other people. But this woman, she was born with a rib that came off of one of the bones in her cervical spine. So the bones in her neck had a rib that came off it. Well, by the time she was 30 something late twenties that rib had become six inches long. Now you can imagine if you've got a bone growing in your neck that shouldn't be there. That six inches it might hurt a little. This woman now. She lived in a rural area and didn't have insurance. So that sets the stage. Are you ready? She had gotten seven X-rays over the course of eight years. No one found anything And it got to the point where she'd raise her hands over her head and hit the floor because she'd pass out.

J Smiles: 34:34

What do you mean? no one found it. They ignored it or they didn't see it. Was the X-ray machine have a light in it, like I feel like this is almost an easy bake oven that they didn't screw in the light. This was because how do you not see a bone?

Jen Hardy: 34:56

Well, that is exactly it. And here is the craziest things The doctors never found it. So the reason that it was found is because she started dating a physical therapist And he said oh, you know, i can give you a massage. When they first started dating. And she's like great, there is this nut that I've had for a long time. And he started rubbing on it and he said sweetheart, that's not a muscle, that feels like a bone. And so he I sent you a picture, by the way So he said I think we need to go again to take you to the doctor.

Jen Hardy: 35:34

So they did another X-ray and he looked at it And he said that is a rib, and I can't remember the name of whatever it's called. But yeah, and so after that point, it still took her two years to have the surgery to get it out. And one of the things that the doctors told her her mom is in a wheelchair, and they told her when she said she was in pain, they said you know what, sweetheart, your mom is in a wheelchair And you probably think that something's. You're probably basically making it up so you can pretend you're sick like her. Yeah, that's what she was told. Can you eat this?

J Smiles: 36:21

Bone is, it says, wide as a finger and a half And it feels like it's at least as long as from the tip of my middle finger to the middle of my palm. Yeah, bless her heart.

Jen Hardy: 36:41

Isn't that crazy.

J Smiles: 36:42

Thank goodness she started dating this physical therapist person.

Jen Hardy: 36:47

Right, yeah, yeah. So when she'd lift her hands overhead, that bone would actually cut off her artery and blood would stop going to her head altogether and she'd faint. Yeah, when she's okay now.

J Smiles: 37:02

But they didn't believe her. So this gets back to advocating for yourself, absolutely, which is as a caregiver. It is something that here at the parenting up family we are constantly saying. That's right after the safety of our LO, we are pushing for a general advocacy for them. Even if you are LO, is in a facility or living with another family member, who is that primary advocate? or your LO? because they, he or she, cannot be expected to do that for themselves.

J Smiles: 37:56

And, as you were saying when you were the person who was ill, even if you're not elderly, when you're sick, even if it's not something with cognitive decline, you're in pain and you don't like nobody likes going to the doctor. You're in pain. There's a bit of confusion. You don't really know why you're in pain or you just want it to go away. There's too much to try to remember. We all need an advocate to assist us and the older we get and if the disease we've been told it's fatal, and then if you throw in some mental decline, it is a wrap. Somebody has to have notes or audio notes or if you want to use pen and paper to keep up with all of this crap. It's too much stuff to try to keep up with. You need an advocate and somebody who's going to keep the pressure on the doctors, the nurses hell, obviously, the radiologists. Now if you're telling me you can't see the damn bone, all an x-ray is is tissue and bone. It is not even a complicated Yeah, and that was a bone.

Jen Hardy: 39:21

Yeah, I mean, how do you? I don't even know, I do not, But you know.

J Smiles: 39:28

I would have been so damn mad I would have taken that bone and shook it everywhere around town that I'd ever gone to. They probably would have put me out of town. They would have run me out of town old school style in the western movies They would have. I would have been run out of town. Yeah, i would have been a mess. You also have four books I do. All right, three are journal based and one is not. Tell us about the one that is not.

Jen Hardy: 40:01

So the one that's not is the Sick Moms Guide to Having Fun Again, and it's for moms that don't, that have a chronic illness or are just plain tired, honestly, because being a mom is tough, you know, it wears you out. And so when I didn't feel good, you know my kids, i had the older kids and I had the younger kids, and everyone wants you to do things and be engaged. And sometimes you think all I want to do is just curl up in a ball. I don't feel good, but you can't because you're a mom. And so it tells you each chapter is a different thing, like one is how to just feel good when you're alone, or how to feel good, how to have fun with your friends. You know, even when you don't feel good because a lot of friends don't understand whatever.

Jen Hardy: 40:37

And then there's a list in there of 100 things you can do with your kids, 50 when you can't even get off the couch. So if you're a mommy doesn't feel good, just have the kid get the book, open the page and point to what they want, and you don't even have to think about it. And there's all these ideas Because when I didn't feel good, that's what I needed And, like I said before, whatever if I'm not getting a need met, what I'll do is I'll create the thing. So if it'll either help me or it'll help the next person, So that is such a great concept.

J Smiles: 41:09

I don't have the thing I created because, because it'll help me or help the next person. That's how I started this podcast. I was like, uh, uh, everybody and everything that I hear about Alzheimer's and being a caregiver is heavy and it's hard and every hell yeah, all the caregivers. we already know that it's hard. Where is the funny? Because there's a lot of funny crap that happens. right, your L? O Say some funny stuff. You think of some funny things like did I literally just go through that or did I have to think about that? I wonder if anybody else is feeling this way. I was like you know, i'm gonna just start talking about it And then, the more I did, the better. the response, you know of talking about the real life things. that makes the disease human and not just statistical and scientific. So that's, that's great.

J Smiles: 42:14

And who of us can't use 50 or 100 things to do while you're on the couch, to have fun? I don't care if you have kids or if you're not, even with a awful terminal illness where you're not even supposed to be alive again. Shout out to Jen one more time about that. But who can't wouldn't enjoy things? Oh, i could have fun on the couch. It's like a good Friday night, tuesday night, any night, i mean. those are ways to keep your mind engaged and keep your spirit engaged, because way too often we're burned out.

J Smiles: 42:52

And, as a caregiver, our age range, we're the sandwich generation. We're caring for our parents And we're caring for our children, even if neither of them have become dependents, so to speak. they just may be needing a air quotes, a little bit of help. Maybe no one even has a diagnosis of ending. that's fatal. Your parents and your children could be healthy. They are just maybe 15 and 75. And so you just kind of got to take everybody to the doctor and make sure that everybody got their flu shot.

J Smiles: 43:34

But it's still your responsibility. Hey, mom and dad, did you really change your air filters to your kids? Hey, did you do your homework? You're still having to monitor and manage these breathing things. It's more than watering plants. And we're the first generation to be in this position because people are living longer. The boomers are living longer, And then we had kids later. So here we are, playing at both sides of the fence, so to speak, or burning candles burning our candle at both ends, and so to have that kind of information in a book that you could just flip to any given night sounds like good fun to me. And then you have three five year journals.

Jen Hardy: 44:29

I do. So, you know, when the big thing happened in 2020, yeah, the big thing I had a journal and it was a normal journal, like a normal size journal, you know, like a little one, and it was a five-year journal. And so I started writing And then, when 2021 happened, i got to see what I had been writing like in March and April of 2020. But there was only room for one or two sentences and I thought, you know, it would have been nice if I could have really seen, because it was apparently very traumatic for me as I was going back and reading, you know, because we thought the world was going to end. We didn't know it was happening And, with health issues, my doctors are all you're going to die. It was a thing, it was a little bit of a nightmare And I thought, well, why don't people make journals? I want a full-size five-year journal so I can write a paragraph every day, i really know what's happening And then I can compare one year to the next. So I thought, well, i'll do this for moms. So I did a journal for sick moms And my journals are a little different because every month there's a prompt, but it's an open-ended prompt, so I'm not telling you what you have to do that month, but I'll say something.

Jen Hardy: 45:32

Like you know, it's easier if your medical things are in order. So this month you're going to plan a way to get your medical records in order, and then you are going to write how you're going to do that specifically, and then when you get to the next year, well, if your medical stuff still isn't in order, it reminds you oh, i did not do that Or I don't like how I did it, and you know that kind of thing. And so every year when you're going back, you get to reevaluate what your goals were. Do they need to be the same? Do they change? So there's that one. And then there's one called the path to happiness, because a lot of people, depression is like off the chain right now, and so it's a lot of open-ended questions. What makes me happy that I can do more of this month when you write that down and you do that thing? Some of them talk about what are some of the negative things in my life that I can let go of, because if we're going to be happy, we got to let go of that, you know. And then there's one for business people, about starting a business, because a lot of small business owners don't set and check their goals for some reason, and so that gives them a way to do that.

Jen Hardy: 46:37

And I know, as we're talking, i'm thinking there should be a caregiver journal. That may happen. I've already got a podcasting one of the works. But a fun fact, i found out why people don't make full-size five-year journals, and the reason is it's two and a half pounds. It's the size of a college textbook, but you won't lose it on your nightstand. And are you ready? Somebody breaks into your house. You got a weapon right there. So there you go. It's got multiple uses.

J Smiles: 47:05

It does have multiple uses And I will offer that. College text and college encyclopedias, or whatever you want to call them. They're purchased. They're purchased by people who are in college. They may not be purchased by everybody, but there are people who need them, so it's the same.

J Smiles: 47:27

As you know, you can still find a paper atlas. There are people like me who still like well, yes, i have all the global, i have all the apps telling me about the roads and the global situations, but I also, when I'm driving state to state or around the world, i want a paper map atlas where I can pull that thing out and look before I leave the hotel or when I'm in the car. So I don't just see where I am, but I see where I'm going in relation to where I was. I need the whole spectrum. Don't just tell me the block that I'm on. That's no good.

J Smiles: 48:20

I got to have a much greater sense of the space that I'm in, especially when I'm in another country, because what happens if I take a wrong turn somewhere? I need to, you know, i need to have a much better. It gives me more grounding, i guess is what I should say. And so there's somebody, there's an audience for this two and a half pound journal and they will say, yeah, this is good. It's just like for the Bible or the Torah or the Koran. People don't want the Cliff Notes version of that. They were like give me the whole stinking thing because I want to read it and read the same thing every year. But hey, there are many women that want to do it.

Jen Hardy: 49:04

Yeah, and you can really see. You know, and that's the one thing I found with the five year journal is I can see where was I. You know where was I, what frame of mind was I in. And I think that's so important because you know, especially when you see it the same day. So you know, around certain holidays or whatever, what did we do? How did that affect people? You know, do I want to do it the same way? Do I want to do it different? We don't always remember, you know, especially when we're caregiving or we have health concerns, or you know things that are like you said. I mean, our brain is in a thousand different places, so how are we supposed to remember those little things? And it's a great way to pass on to your family your life, you know. So be sure that you want to write things that you want other people to read, because they will read it with me once, i'm sure enough. So you know there's that.

J Smiles: 49:50

Absolutely, i'm here for it. I like the notion of a connected look back along this caregiving journey Or any slice of my journey as a podcaster, as a comedian, as a philanthropist. I do have tronches of my life and they, while they all emanate from me and I'm one human being. They do not always overlap very cleanly And you've sold at least one. I tell you that I'm here. I'm here for the two and a half pounder And I know exactly where we go And the good thing is, i would always know where it was.

J Smiles: 50:36

Small journals. I often don't know where the hell I put it last, because I pick it up and take it. That thing would have one specific place that it would stay in my home. So, as we wrap this up I really enjoyed our conversation. I want to say that you have so many touch points within the world of caregiving. I want to ask you something I've never been able to ask a guest before As a caree when your husband was providing care to you, what do you feel was a very, what was a point where you felt extraordinarily vulnerable, where either your husband or some other family member or doctor or nurse really nailed it and did a great job or took such good care of you, or you really felt seen because they did a certain thing or they handled you in a certain way and you're like, oh, mg, as a caree, that really made me feel safe or comfortable or seen again.

Jen Hardy: 52:01

Well, there's two things. One is my husband has a way of just looking at me and knowing when I'm having a hard time breathing and no one else can really tell. But he'll say, hey, you're having a hard time because I have, and I have a nebulizer, you know, to get my medicine. He's like can I set up the machine for you So I don't have to ask? He can come to me, which is nice.

Jen Hardy: 52:22

There's something about having other people take care of you. I feel good to know that they're caring enough to do that. Yes, but I don't know. You feel like you should be able to take care of yourself And there's something it feels demeaning, no matter how the other person's doing it. There's there's points and you know it kind of ebbs and flows between thank God, i've got this person taking care of me, i need it And you get angry and, unfortunately, will come out as the person taking care of you, right?

Jen Hardy: 52:55

I get angry that I can't do things. I get angry that I can't get up because I still I mean, i'll spend months in bed. I actually have a hospital table and I put my podcasting set up on the hospital table and I'll podcast from bed and work on everything from bed when I can't get up, and it's so. It's just, you feel so powerless, It's really hard. And so when my husband would let me do something for him when I could, that was really nice because I want to give back. And then the second thing, one, one piece of advice I would give is if you're taking care of somebody and you say you're going to do something, do it. Don't offer and then not do it. That is the worst feeling. So if someone says, hey, you know, i realize you guys aren't feeling so good. How about I bring you a meal? That's great, you know what? Come and bring me a meal. Don't tell me that you're going to do it and then make me ask or say let me know. When someone says, let me know what I can do, i'm not going to let you know because I don't know if it's a pride thing or what. But if you know that someone needs something, tell them. You know what? In this moment, what do you need? And then you follow through on that. Don't make them beg.

Jen Hardy: 54:07

I think from a carry perspective it feels bad. I have a hard time in the morning. My body, i'm in a lot of pain in the morning And every single morning my husband makes me a smoothie because I can't eat solid food until about two because I've got whatever. And so every single day he doesn't ask, he doesn't whatever, he just provides that for me, and if he asks if I want one, i'll always say no, even though I want it. It's dumb, i'm not going to lie, i know it is, but I do, and so just know that it doesn't. It's not about you. When the person's angry, it's almost always at themselves, because they're frustrated.

J Smiles: 54:49

My mom. Her dementia has the Alzheimer's has increased so much now that we're not in this space. But the first five, six, seven years, if you use the word help or anything like it, any sin in them, she was going to say no need or help anything close. She would say no, mom, or can I get mama? can I get you something to drink? or can I get your shoes? Do you need a coat? No, i don't, i'm fine.

J Smiles: 55:35

If I started, i can get this for you, i can get it myself. And as much as I thought, hey, i'm your, i'm your daughter, i want to care for you and well, you, like you know a little bit of it is you're my elder and I want to do it because you've earned the right to just sit on your ass. I mean some of it. I'm thinking it's nothing to do with the Alzheimer's is just to relax. Right, you know it's kind of your retirement age and let me get your slippers. But my mom did not retire on her own terms. Therefore, all of this was out of her timeline and out of her control and she was about it, and so the points that you're making as the carry, i believe she would have said something right in line with it, if she were given the choice.

Jen Hardy: 56:37

And it does feel silly, but but it's true. It's just I'm being told. And why? why do we say, no, that's the dumbest thing. You're standing right there, you've got the thing I need. I'm still going to tell you why. It's a mind game I play with myself all the time and I want to quit, but I don't. So, yeah, i'm not doing.

J Smiles: 56:57

And the thing is, though, that's what we're here at the parenting up family. We're here to have more understanding about what our LL's may need, maybe feeling, maybe going through. And you, like I'm saying you're such a unique guest for us here because, while absolutely you do not have, your ailment was not dementia related, but you were And, at times, are the carry. There was a point where it was so debilitating, you know you, you were in the trenches Again, you are a modern miracle, as far as I'm concerned, for caregivers. How do you keep it fun? How have you over your trajectory? because you've been a, you've been in and out of this caregiving things since you were like 13 or 14. And I can tell just by the smile on your face and by some of the things that you've done and said you, it appears that you don't allow too much darkness in your life, or you don't allow it to stay too long before you bring in some sprinkles on top of that ice cream, so to speak.

Jen Hardy: 58:20

Yeah, so OK. So two things. One, we have pity parties. So never longer than five minutes, some one, sometimes one, sometimes five. And this is what you do. You set a timer and I do this with my kids too And if you're having a bad day, things are going wrong, doctors aren't listening, you've got a bad diagnosis, whatever.

Jen Hardy: 58:38

Set a timer and you get to yell and cry and scream and whine and moan and all those things that our society tells us you're not allowed to do. You get to do them, and five minutes seems like a heck of a long time, to be honest. When you're doing it and I'm serious, i mean you can just wail about it, but when the timer beeps, you're done, because we're always told you know, suck it up, be quiet, don't complain, don't whatever. But we have to, you have to. If you don't get it out, it just stays in there and then it festers and then it comes out at other people. So the pity party is all the thing.

Jen Hardy: 59:13

And then another thing is games. We play games. So, especially as a caregiver or when you're sick, it's real easy to say you know what, i'm just going to turn on the show and I'm going to, i'm going to binge, watch whatever and not think about it. Great, that's fine to do some times. But, girl, if you have been for 30 days and not turn that television off, that is not helping. At that point you are like no, so we do board games, card games, so many games.

Jen Hardy: 59:40

So, like I said, i have this hospital table. So if I'm in bed, play a game around the table in bed, or if I can make it to the other table, we'll sit at the dining room table. We got this 10 foot long table so everyone can sit. When my big kids come And we play games, even when we really don't want to, my husband and I were tired. It's been a lot. My kids have autism. They've been yelling, whatever. But when we play a game, by the time that game's done, we've all been smiling, we've been laughing And really that's what we need. We need those endorphins. We need to feel good And we're not getting that from the TV.

J Smiles: 1:00:13

I love it.

Jen Hardy: 1:00:15

And then I do have one other thing that I'm doing that I would love to share, because you and I have not talked about it yet, but I think, specifically for your audience, it's kind of a good thing. It's a new thing called Jen's Friends, and what I do is I send a video email every single day just two to three minutes to people who live alone to encourage them, because I don't always hear from my older kids And I thought what if I lived alone and I didn't hear from my kids? I'd be so sad. And so it's just telling people that you're great, you're fabulous, you're going to have a great. It's different every day, it's not the same thing every day, and we also work on little projects together, like we're going to clean out the junk drawer this week, or we're going to give them something to do, so if someone's living alone and kind of down and whatever, they have a smiling face in their inbox every day.

J Smiles: 1:01:06

What is the demographic Or age or gender that you are targeting?

Jen Hardy: 1:01:13

So basically women over 50. Because I talk a lot about fabulous and beautiful and whatever. So, yes, specifically women. Unless a man wants to be fabulous and beautiful and talk about glitter, sometimes Absolutely, which you know what You go for it, that's what you want, but mostly it's just a woman to woman kind of a thing. Yeah.

J Smiles: 1:01:37

How would they join or become a part of that community?

Jen Hardy: 1:01:41

So on my website Jenhardynet slash friends.

J Smiles: 1:01:46

Okay, i made it super easy, but if anyone comes to Jenhardynet they would be able to see.

Jen Hardy: 1:01:52

They'll be able to find it.

J Smiles: 1:01:53

Right To find that, as well as the books and the podcast, podcast and everything, it's all in one spot And everything that we've talked about and we've heard today.

Jen Hardy: 1:02:05

Yeah.

J Smiles: 1:02:06

Everything's on one spot.

Jen Hardy: 1:02:08

I'm so glad you had me come here. Yeah, you are a hoot. I like this. Yeah, we need to laugh more. Everybody needs to laugh more.

J Smiles: 1:02:18

Yeah, I mean humor heals.

J Smiles: 1:02:20

It does Humor heals And it's um I don't remember the exact stat anymore It's like it takes like three times the muscles to frown as it does to smile, so frowning actually adds to your wrinkles. So for everyone who's worried about that, um, smiling is even better for your skincare. There you go. Even as simple as that as well as, like what you're speaking of, your endorphins and the natural stress reliever that occurs when you're laughing, even if you fake the laugh. Neuro neuroscientists and neurologists have told me Jay smiles even if you start off laughing. You're faking the lab And you keep going And if you can do that for like 30 seconds, that actually your body doesn't know. Like your body and your brain or whatever, they don't know that no one you didn't just hear the best joke Dave Chappelle or Ellen the generous ever told you It starts releasing all the same little chemicals and little squirting out whatever out of your heart and your thyroid And I like, hey, well, who doesn't know how to lie a little bit? So while you know, you lie to yourself all the time about Oh yeah, i didn't gain 10 pounds over Thanksgiving. Well, you might as well lie to help yourself feel actually be healthier. Yeah, fantastic, i have had the most insightful and impactful conversation with you, because I you've told me things I've never heard before.

J Smiles: 1:04:12

I love learning. I'm a lifelong learner. I know I'm going to be learning things until I close my eyes. That's just who I am.

J Smiles: 1:04:23

Often I have suffered from depression, diagnosed since 2005 or something. I've had a lot of depression. I've been told that it's. I've had maybe three therapists over my lifetime as I move different locations And they've each said like wow, i have some of the most intense or the deepest lows And I've been situationally induced depression that they've ever seen for it to not be chemically imbalanced. They're like wow, damn, jsmiles, like so you can, i'm triggered by external life happenings and then but that boom then and that is it, and I see it, i know it, but I've learned so much in how, what can happen and what parameters and safeguards I have to have around my life And therefore it's my pleasure to continue learning and to meet someone like you that allows me to know additional coping skills, to share that with the parenting up family across the globe, because you never know what you may need next and when you're going to need it. Yeah, so thank you, thank you very much for coming And you're welcome back anytime, as you continue to produce new resources, new products, new services.

Jen Hardy: 1:06:16

I appreciate that. I'd love you to come on my show and share what you know. Of course, parenting up, of course we need it. Awesome, absolutely Awesome, okay.

J Smiles: 1:06:29

So is there anything else you you think the parenting up community needs to have? that we cover all the topics you thought.

Jen Hardy: 1:06:44

We did for today. Yeah, cover a lot We did cover a lot.

J Smiles: 1:06:48

We did cover a lot. I'm sure there's much more. We didn't even really tap into the caregiving with your children currently, but maybe next time. THE SNUGGLE UP: Number One - caregivers, listen to your body. Do all you can to only be a CG caregiver. Nobody wants to be a carry. Come on, they're levels to our community, parenting, our community. Yeah, you got the carry and CG. Gen is both. Put your mask on first, like they tell us on the airplanes. Your body will let you know when something is wrong, when it needs more of this and less of that. Do it.

J Smiles: 1:07:53

Number Two - give your best every day And then move the hell on. Do your best not to pout, panic or praise too much. What you mean, jaysmiles? I thought praising myself was great because I'm a caregiver and I need to pat myself on the back. Okay, okay, okay, i know, i know, i know. However, praise too much It'll keep you in yesterday. Too much praise of yesterday might make you beat yourself up today If you don't perform as effectively or as well as you did yesterday in your caregiver duties. Do your very best today. If each day you give it the best you have, that's it. There's no reason to pout or panic or praise too much about today. Move the hell on. Number Three - caregivers. And I am certainly talking to J Smiles.

J Smiles: 1:09:18

After we tell our LOs we're going to do something, we have to do it, they may not call us on it, they may not fuss or complain or needle us about it. That's what my grandfather used to say I ain't going to needle you about it, Jeh, I ain't going to needle you about it. We don't know, maybe they forgot, maybe they already feel guilty because they can't do for themselves. If we say it, even if you don't use the word promise or pinky swear I don't know where the hell that came from Don't tell them unless you know you can. And if, for some reason, your schedule changes and you're unable to follow through, give the task to another person. Hey, my line sister Janel is my first line of backup in Atlanta. Hey, Line, i'm not going to make it home from my gig in Chicago. Can you go by the house and take this to Zetty and just say hey, here you go, zeddy And Janel will do it. That's my backup. Thank you, Jen, for reminding us. Our LO's still have their spirits and the spirit knows. Thank you.