CAREGIVER STRESS & CAREGIVER RELIEF THE HIDDEN CRISIS IN DEMENTIA

Big Life Pivots And Purpose

SPEAKER_03 0:00

Parenting up family. You know what it is. It's your girl Jay Smiles about to tell you about how hot this episode is. I don't mean hot like fire, I mean hot like passion. You know when you're young or just younger, I'm not trying to make anybody who sees and feel pissed off. Don't do me like that. And you wonder, what am I gonna do when I grow up? Some of us are 50 and 60 years old still wondering, what am I gonna do when I grow up? And then something happens, a tragedy, maybe an opportunity in your life, and you feel pushed and led in directions that are scary. What do you do? How do you handle it? Do you change? Do you pivot? Do you modify? Do you get pissed off? What about when you're young? Maybe you're a teenager and somebody that was helping to raise you dies. What do you do? Where do you turn? And how do you find meaning and purpose in your life when you get punched in the gut before you can even coach? And then maybe in your 30s and 40s, you get your knees knocked from up in the middle. What do you do? I tell you what, we about to learn what one lady did, and hell yeah, I'm fired up and inspired because the biggest thing she did, she never gave up on herself and her purpose for baby. So come on, come on in, come on in, come on in, family. Her name is Diane, but you're gonna find out real soon the new nickname Jayce Miles had to give her.

What Parenting Up Stands For

SPEAKER_03 1:47

Parenting up Caregiving Adventures with comedian Jace Miles. It's the intense journey of unexpectedly being fully responsible for my mama. For over 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.

SPEAKER_01 2:12

That's why I thought it's comedy. Don't be ready.

SPEAKER_03 2:17

Caregiver Newby, OG, and village members just willing to prop up for caregivers. You are in the right place.

SPEAKER_00 2:27

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

SPEAKER_03 2:40

Today's supporter shout out comes from Facebook, Valda Harris Montgomery. Quote, I absolutely love this place. Exclamation point, all kind of hand clap emojis and hearts and 100%. And that was from our episode highlighting via cognitive center. You know what, Valda Harris Montgomery? We loved it too. And hopefully all of us can have an experience like that in our communities coming very soon. Now, do you want to be the recipient of a supporter shout out? You know what to do. Leave a comment or a review on Apple Podcasts or YouTube. We're Parenting Up everywhere.

Caregiver Stress Hidden Crisis

SPEAKER_03 3:27

Today's episode, Caregiver Stress and Caregiver Relief, the hidden crisis in dementia care. Parenting Up Podcast. You know, I get excited whenever we have a new guest. I get excited when it's somebody who is in the streets, doing the work, getting their hands dirty, and they are welcoming enough to share their lived experiences with us. And today is no different. Hey Diane. Hi, how are you this morning? I'm fantastic. I'm awake. I had breakfast and coffee. That's the perfect start.

SPEAKER_05 4:04

Absolutely. And uh thank you for having me on today. I really appreciate it. I feel honored. Oh, thank you so much.

SPEAKER_03 4:12

Let us know what is your relationship with Alzheimer's? What dementia, what got you involved to be so passionate about it in the first place?

Diane’s First Alzheimer’s Lesson

SPEAKER_05 4:23

Um, I am a nurse. I've had I have 53 years of experience, and my first experience with Alzheimer's was my grandma, my grandma Smith. And she lived well into her 90s. She was a woman, she was proud, she walked all the time. She I know your listeners aren't gonna know who this is, but she used to exercise every day on the TV with Jacqueline Lane.

SPEAKER_03 4:50

He was Wait a minute, Diane. Who doesn't know Jack Lelane? That's like saying you don't know George Washington. He's like the founder of television video aerobics.

SPEAKER_05 5:00

Yes, yes, yes. But you know, a lot of our youth don't know that. So um, yeah, but I my grandmother was a real good uh role model for me. And when she got older, uh I had moved married and moved moved away from home, my husband, first husband, we transferred a lot. And um, so my grandmother developed dementia, and um they ended up putting her in a home, a nursing home. And uh now my mom my grandmother had three sons. My dad and his brother are twins, and then my uncle Don. And every day one of the brothers would go, one of the sons would go to see my grandmother. Um, my grandma had a pacemaker in, and when she went, when she was happy, the battery went out on it, and she had to have it replaced. And at though in those times, you know, nobody discussed, you know, do you really want to do it or not want to do it because of her mental cognitive status? And uh so I came home to visit, and one of the things that um everybody says, grandma's not gonna know who you are, don't get your hopes up high, she's very confused, doesn't know any of us.

SPEAKER_03 6:16

So how did you feel when they said that? I always want to know because people take it differently.

SPEAKER_05 6:22

Oh, well, you know what? I I knew that it was a possibility, and there's always a sadness to me about that because I'm thinking, oh, my mom died very young. My mom died when she was 47 and I was 18, and my grandmother was my support. Um, yes, I'm the oldest of four, had to help with my siblings when I was going through nursing school. So I held, um, we had a special bond. And at first I was like, I'll be devastated, you know. It's just uh, but then I, you know, tough old me, you know, just gonna bite my lip. And if she doesn't remember me, okay. She had just waking up from anesthesia, she's in her room, nobody else is around but by me, and I'm sitting next to her, and she says, You know, you look just like my Diane. I was like, Yes!

SPEAKER_03 7:22

You're like all those years, all of that time, all of that helping around the house. Yes, something stuck.

SPEAKER_05 7:31

Yes, well, that's beautiful. Oh, you know, and it it it gave and I still talk about it, it gives me goosebumps. My grandmother used to take me every Saturday to downtown Pittsburgh. We took a bus, and every week I had to have my in the winter and fall, I had a muff. You know, in those days you had these little muffs you wore around your net where you could put your fing hands in. And I had to wear gloves, white gloves. And the muff. Wait, Diane, white gloves and the muff? Oh, oh, my grandmother, absolutely.

SPEAKER_03 8:04

So you didn't so I should call you your Royal Highness. Oh, clearly. Look, I had a muff and I had gloves, but I did get to choose which one.

SPEAKER_05 8:15

Oh, oh no, my grandmother was like, no, no, no. And and I have to tell you, every week um my mom would would forget to add the gloves or whatever. And every week my my grandmother would buy me a new pair, you know, when we were downtown. And we had our routine of where we went, and um, I have very fond memories of that. I I want to share something with you. Um, my grandmother had this big dining room, old dining room set, and she kept candy in the one part of the uh that cupboard. And when you would go in, we we were kids, you know, and we would run in, and after we were loved up on them, we would go to the candy cupboard and we would open it up and get the box of candy out. Um, the the container of candy out. And um, she gave that that furniture to my um cousin, and I went to visit my co cousin one day, and I opened up the cupboard and I could smell my the candy, and it reminded me of my grandma. The the it just brought back so many memories. So isn't that magical? It it it really is when it happens, it's magical.

SPEAKER_03 9:35

I have um my maternal grandmother was my first love affair. I I that's the best way I know how to put it. Like I just thought whatever she said was fine. Now I was also very close to my her husband, my mom, and my dad, but my grandmother, I think she instinctually understood me faster than all the other adults. And to this day, I have her sunglasses and her reading glasses in the original case. And every so often, I can't do it too much because I don't want to lose a cent. I just open it up, take a quick whiff, and in that moment, it doesn't matter what is going on in my life, I am instantly calmed down. So, shout out to all the grandmothers who are making these special relationships with your granddaughters well after you're gone. Please know that what you've done will resonate and keep them moving

Caregiving At 18 And Grief

SPEAKER_03 10:33

forward. So it started with your grandmother. Is that why you went into nursing? Because you knew you enjoyed caring for people?

SPEAKER_05 10:39

Well, I I will tell you, I'm the oldest of four from a big Irish family. And um in those days, you were either a nurse or a teacher.

SPEAKER_03 10:48

Okay.

SPEAKER_05 10:49

And my mom, uh, I bec became seriously ill with cancer, lung cancer, when I was uh in my junior senior year of high school. And um, I can remember having to take care of her. I my dad worked all the time, she had radiation and stuff uh that we dealt with, and it was it was awful. It was uh so I was a caregiver at a very young age.

SPEAKER_03 11:16

That had to be tough. We still don't understand lung cancer that well. And if you're saying you were still in high school, that that's that's extreme.

SPEAKER_05 11:25

Well, the thing is, my mom never smoked. Oh she lived her parents owned a dry cleaner, and all of her siblings, there were 13 of them, um, all died of some form of cancer. I'm sure it's the exposure. But um, my mom, um, I was the caretaker for her, and she was so proud that I was gonna go to nursing school. Oh, and that's fantastic. I went to a small Catholic school, and I we I was already accepted at school by the my senior year, and um decided where I was gonna go and was accepted. So I actually the good kid, I was always the good kid, you know, the behaved kid because I'm the oldest, responsible. I used to Are you are you Catholic?

SPEAKER_03 12:12

Yes. Oh, then the rules. I I was also I also grew up Catholic.

SPEAKER_04 12:17

Yes.

SPEAKER_03 12:18

My grandmother's from New Orleans, so honey. Oh, God bless you. Like the Pope said it, and I don't know how we didn't have the internet then. I don't know how she knew the Pope's rules by lunchtime. Like the Pope just said it from the Vatican. Yes, there's no CNN. Lady, how do you know? Yes, yes, yes, and are you sure that the Pope wants me to do it? Maybe he wants the adults to do it.

SPEAKER_05 12:42

Exactly. But I skipped out of school every day at lunchtime. Okay, and I walked five miles home every day to help my mom with chores because she wasn't able to do them, and nobody would expect it of me because I was this I I will say I was quiet in school. You know, I'm not quiet anymore. And and you know, when you put a nurse's uniform on, you I get into my nurse role, and uh my family calls it the bossy know-it-all sister. Same thing. Yeah, it equals nurse.

SPEAKER_03 13:18

You know, yeah.

SPEAKER_05 13:19

So I really, really um I went into nursing. Uh, in fact, when my mom died, I was a freshman in nursing school. She was just told she beat cancer. And on the elevator on the way down to go across the street to school to say, hey, we're gonna let's go Christmas shopping. We have things to do, where it's gonna be a time to celebrate. She threw up pulmonary embolism and died that night. God's gonna take you when he's ready for you.

SPEAKER_03 13:49

That's correct.

SPEAKER_05 13:50

Yeah, that's correct. But it changed my life. But everybody wanted me to quit school, stay home, help raise my siblings, and it was my mom that was driving me to stay in school, and my grandmother supported that. So that was meaningful to me. So uh I became a nurse uh to because I liked helping people, and then I um continued it uh because I wanted my mom to be proud.

SPEAKER_03 14:17

Oh, I almost wish I didn't have any other questions because that would be a great ending. But there's so much more for the parenting up community to learn about you and your journey. So you're a nurse, um, you're being fortified and inspired by your childhood and specifically even more your maternal um relationships, and from there, how did uh being a dementia Alzheimer's caregiver advocate really take root in your heart? Did that happen during your journey as a nurse? Did something happen in the last 10 years?

SPEAKER_05 15:01

Journey as a nurse, yeah.

Building Caregiverelief.com After Burnout

SPEAKER_05 15:03

I um I actually in my 40s I started my first website. I had had a car accident while I was working in hospice and I uh was looking at alternative ways. I I I will be honest with you, in the 80s when managed care started, I saw health care change, how we delivered health care in the hospital. And it got to a point, and and I know nurses are even dealing with this even more now, but I would get physically ill before I the day before I'd have to do a shift.

SPEAKER_03 15:39

Really?

SPEAKER_05 15:40

Oh my god, yes. So this is in the 1980s, but not previously. No, no, no. It was in the 80s, it started and into the 90s, it got worse. And I decided I wanted to look into some an alternative setting. And I had learned, I had done case management, I had done home care, I had done orthopedic rehab, uh, I had done senior behavioral health. And dementia, uh I saw how dementia impacted families from the frontal tote temporal lobe dementia to the the uh Alzheimer's or Lewy body dementia. So I'm at a crossroads. I had a car accident, my my neck made, I was had a year of vomiting and uh sickness due to my uh injury. So I thought, what can I do?

SPEAKER_03 16:34

Hold on, wait, wait a minute, Diane. Wait a minute. You know, I it's parent of caregiving adventures with comedian and it made Lemmy stress, comedian Jay smiles. It is never my goal to be uh forward or off-putting, but I hear jokes everywhere, hear jokes all the time. You're telling me that in the middle of vomiting and throwing up in severe traumatic neck and head pain for a year, yeah, you're spending your limited free time trying to figure out how to go back to work and and help more people. So whoever is hearing this in the parenting up community, okay, she's going back for more. You know what you call commitment and passion. You know that you are working in your purpose when in the midst of pain, you're trying to figure out how to get back to it. How inspiring is that?

SPEAKER_05 17:28

Thank you. Thank you, thank you. But you know, I'm a I'm a fool for punishment, I guess.

SPEAKER_03 17:35

Well, you're you're Catholic, so that means that's that's a part of it.

SPEAKER_05 17:40

Catholic guilt is so have anything on us. Let me tell you.

SPEAKER_03 17:46

So you you in doing your research, you you had some experiences, but what did you find that really uh took root in your soul?

SPEAKER_05 17:55

Well, I I actually my sister-in-law was building her own website. She it was a business called Site Build It. And she was telling me that you know they had this special where you could build your site, learn how to build your site, and um and they would provide uh a free course for a year on how to make it successful. Nice. And, you know, I thought, you know what, let me give it a go. So my first website that I built myself didn't know HTML, didn't know any of that stuff. Uh you know, it it was really, really hard. But um, you know, it's it's just another challenge or obstacle that I had to overcome. But I built my own site, it was called aginghomehealthcare.com. And I it was then when I started doing my research on the growth of the aging population and what we were going to face in the next 20, 30, 40 years. And I uh started uh at first because it was just then they the starting of everybody the boomers wanted to remain at home as they age. Yes. And so I started read you know doing research on aging in place, what could I do? And the other big thing that came up was um dementia was going to be hitting the boomers hard. Okay, and there was no at that 20 years ago, there was so little information about it, there was no support, and um, I saw there were gaps in care and the support of the family caregivers. So uh I am I I did courses and stuff to improve my uh knowledge of dementia, and I wanted to be able to help seniors um be able to get prepared for their for end-of-life issues, and I wanted to help the family caregivers navigate the medical delivery system because Lord have mercy, it is broken. And I wanted to make sure that I was able to, I have so much knowledge and and uh information in me because of my different life experience, is from everything from in the hospital to home care and even outpatient, and my care management taught me so much. I wanted to share my knowledge with those that don't have that because the majority of family caregivers have no information on medical information or knowledge, they have no idea what to ask, when to ask it, or how to do certain things.

SPEAKER_03 20:42

Are you telling uh Royal Diane, Your Highness? Listen, I never went to nursing school. I I cried through biology in high school where you had to dissect a frog. I don't know if you had to do that. We had everybody had to do that. Ugh in nursing school. You know what? Again, again, you win because I'll take a frog over a cat any day. I had an A in the class. I divert a little bit. This is a part of being a comedian. Please stay with me. I'll get right back to the point we were really on. I had an A in the class, and she's like, if you Janae, if you don't do, I wouldn't Jay Smiles yet. Janae, if you don't do this dissection, I have to give you an F. Now that won't give you an F of the class, but you won't get an A. I'm panicking, I'm freaking out, I'm begging her every day. This lady, bless her heart for all teachers, she came into class to school like an hour early one day and was there with me, and she put her hand on top of my hand and like made the cut, and I'm crying and eyes are closed, and she's like, if if you can at least if I take like a pair of tweezers and point at an organ, if you name it properly, uh huh, I will give you credit. So bless her. That's the most I've ever done to cut. Or see anything, and I am now really entrenched in being a family caregiver. So you are absolutely right that family caregivers don't have a clue, even with the internet at this time and all of these. Just because there's information out there, you don't know where to start and you don't know what's accurate. And then who has the time? If you've already been thrust into a caregiving space, who has the time to say, Oh, yeah, I gotta work and keep up with my previous responsibilities. And now, in addition, I'm gonna care for this person that I love or that I decided to care for, even if I don't love. And then I'm supposed to, in I don't know, while I'm on the toilet, maybe try to look at one blog to figure out how to take a temperature of somebody that wants to bite the thermometer. Like, who? Come on, come on. So so you uh it sounds like you very organically have been led to what your purpose and your passion, and so you find all these things, you determine I want to help bridge this gap, plug some of these holes, and and and so what do you do?

Why Dementia Care Will Explode

SPEAKER_05 23:11

Well, you know, one of the things I did was I followed what was happening in Japan. I don't know if the Japan is like 10 years ahead of us as far as population, and I was watching what they were doing with their seniors. I know that sounds crazy, but they were starting to develop caregiver robots 10 years ago, 20 years ago.

SPEAKER_03 23:32

Wow.

SPEAKER_05 23:33

And yeah, well, for the I don't know, I'm sure you're aware of this, but your listeners may not be.

SPEAKER_03 23:39

I might not be either. Look, don't give me too much credit. Let's see. I'll be honest and tell you, yay, no. Now I did know that uh, like in terms of like the blue zones, like we don't have any over here, but Eastern Asia, they have populations and pockets that are live, they very healthily live to much longer ages, and they have much lower incidence of dementia. But that I did not realize that they had a robot 20 years ago.

SPEAKER_05 24:07

Well, they were working, starting to work on robots. Yeah, same thing. And you're working on it. Yeah, here's the reason why. The baby boomers are the last generation that re that started to um that stopped reproducing at a level to replace the population. And we now have a public health, a serious public health crisis because we don't have enough youth to take care of our elderly. Uh, our youth are our tax base and they're our workforce. So we are this is globally. In fact, I want you to know, you know, Japan used to revere their elderly. And um, you know, countries like China now realize that, whoops, we screwed up with the the one baby.

SPEAKER_03 24:58

Yeah, one not just one baby, one male baby. Yes. Well, that I mean, even without going to school a lot, at some point, yeah, that's not gonna work because who's gonna make who's gonna help the man make the next baby?

SPEAKER_05 25:12

Well, that's that's a big problem in India and all over because you know they that's a whole nother story. But I will tell you, we have not we are in dire straits because we have that's why Japan was already looking at robots because they saw this. In fact, Japan now wants all their people, they're encouraging them to have as many babies as they can. So it's like the poor women are gonna be, you know, worn out. You know, I'm worn out having those babies. But listen, I come from a big Irish family, you know. I you know, that that was a thing they did anyway. So correct.

SPEAKER_03 25:49

My my my grand, but like you, my mom is a boomer, and so but my grandparents, they also came from families where you produced more children than you may have really desired because it was a part of your economic stability. Yes, yes, okay. So you found you were checking what they were doing in Japan, you were like, whoa, this is cool.

SPEAKER_05 26:13

Yeah, well, and you know what? I thought, you know, one of the things that I did was I thought, you know, I want to focus on helping the family caregiver and the seniors because there's so much information they need and they don't know where to find it. So uh 15 years ago, I start I I start changed my website's name to caregiverelief.com because by then I saw, oh, we're in trouble. And and the family caregivers really going to need more support than they they didn't even know they needed.

SPEAKER_03 26:48

I have to give you a real-time shout out, Diane. You said you're 73. Yes, and then you said 15 years ago. You said it so casually and flippantly. I gotta slow this down so that anyone, because our our part, our community, they're global, and some English is their second language, and they might not catch some of the innuendo or between the side between the lines. So that means that after 40 odd years or so of uh being a professional nurse, you were like 58 or 60 years old and said, No, I know I'm not only I'm going to amp up my efforts in this area, you know. So I just I really want people to recognize that she was like approaching 60 and said, ah, this website isn't good enough. I'm gonna dig in there and I'm a I'm gonna bolster it. So okay, you just changed it to uh Caregiver Relief.

SPEAKER_05 27:53

Caregiverelief.com. And I started um writing books and creating courses to help the family caregiver. Uh I supported family caregivers. I just recently, in the last two years, um, I do podcasts. And I I laugh because I'm getting after 70.

SPEAKER_03 28:17

Oh my God, you are a comedic's dream. So after 70, boys and girls, yeah, okay, after coming through the pandemic, when quite a few people decided the world was over, and since they didn't their previous skill sets are no longer useful, they're just gonna get on the couch and moan and whine. Yeah, and the royal highness Diane said, ah, start a podcast.

SPEAKER_02 28:44

I love it. Lady die, please. Okay, lady die the second. We have to give respect to the first. Absolutely. Yeah, yeah.

SPEAKER_05 28:57

So in fact, I put I I always I I giggle because you know, who am I? Um I'm just an old lady, and I become I'm a radio talk show host when I want to be.

unknown 29:09

That's right.

SPEAKER_05 29:10

Well, you I tell you what, you have the haircut and the red lip. So there you go. The only thing I'm missing is I want those glasses you're wearing, and I want them in red.

SPEAKER_03 29:19

We'll talk about it. We'll talk about it. I know I have the perfect. This is it's a uh mother-daughter business duo, and they are completely committed to super cool eyewear. You know, they source it from places that they're at least trying to ethically be kind to the local community as well as the environment. So it'll be my pleasure to connect you with them.

SPEAKER_05 29:43

Oh, please, because um I I they tell me, now I've been told since I was 50, women of a certain age, over 50, are invisible.

SPEAKER_03 29:55

So I think we're changing that.

SPEAKER_05 29:57

Oh, we absolutely are. And I have to tell you, I I I tease because uh I've become a glitter goddess out in public. You know, I'm in I'm fighting it, man. I, you know, I may be a little chunky, I may be imperfect, but I'm damn well gonna make sure people see me and notice me.

SPEAKER_03 30:16

Everything with glitter is better. Absolutely. All food needs butter. Yep. And all and all adorments need glitter. Yeah. I mean, well, we got it being Catholic growing up in those churches. Everything, everything is glittery, everything important is shite.

SPEAKER_05 30:37

Yes, so yes, yes. So I just make sure that you know I'm noticed when I'm outfit. I that's why I need a pair of those glasses. We're gonna do it. Um we're gonna do that. We're gonna get it done.

SPEAKER_03 30:47

So, with your caregiver relief website and your podcast, what is something that you feel is still kind of seeping through the cracks that that mainstream doesn't understand what family caregivers need because you've been involved in this work very specifically for family caregivers now for more than 20 years. You've been an advocate nationally and locally. So some things have improved. I want everybody in the parent and up community, we're not here to bash the system as if nothing has made some improvement. We have some medications, we have some legislation, but since you're an expert, I want to know if you if you feel um up to sharing, you know, two or three things that you're like, that this still sucks really rotten eggs.

Becoming Visible After 50

SPEAKER_05 31:42

There's two things that I will I can bring up. The first one is the majority of family caregivers feel that they are on this journey alone. And uh 63% of family caregivers become seriously ill or die before the person they're caring for. The stress of caregiving is overwhelming, and it it's negatively impacting a person's financial situation, their uh relationships outside of uh the caregiving outside of their families or their relationships.

SPEAKER_03 32:24

Wait, are you saying that can have relationships outside of the family and outside of being a caregiver? Do listen, I'm gonna give you the red glasses if you tell me how family caregivers have other relationships. Boy, you nailed that one right on the head. It's so tough.

SPEAKER_05 32:45

Yeah, it is, and you know what I tell my caregivers is uh and my listeners is um you really have to think of your outside relationships as a garden. And in order for a relationship to grow, you need water and sunshine and fertilizer. So there's a lot of BS you could add in there.

SPEAKER_03 33:08

Okay, listen, I got that part. The other two water, the water and the sunshine.

SPEAKER_05 33:12

Ah, got lots of BS. Yes, yes, but you you need to nurture those and and give the attention to those relationships. So my answer to this, because people don't understand, the average length of a caregiving journey is five to six years. That's a long time, but some are shorter, absolutely, but there are some that are 20 years or longer. I'm 15 years in counting. Yes, yes. So you understand, you know, there are people that have a family member with dementia or a chronic illness, that it's a very slow decline, but the needs are greater, the the um the expectations are being that are being placed on a person of uh with no knowledge or expertise in the medical field is overwhelming to anyone. In fact, I I tell you what, I had I lot my oldest son was a um veteran. He was in the military and he sustained a severe injury, and what I had to do to help him get adequate care in the appropriate setting is I had to go all the way up to the Surgeon General's office. I mean, I had to fight. I had, oh Lord, oh, it was awful. And right now, our the military medical delivery system is so broken.

SPEAKER_03 34:46

Now our present Would you say that it's more broken than the uh family health care? Yeah.

SPEAKER_05 34:54

Oh, well, I will tell you right now it we mirror, it's mirroring just whoa, that's awful. Yeah, because here's what's happening. Uh, in the military, you hear delay, deny, and wait to die.

SPEAKER_03 35:07

Oh, gosh, are you serious? Is that a phrase? Yes, yes, yes, it's often heard. Delay, deny, wait to die. How about I went to war and you didn't, Congress, president, blah, blah, blah. You wait. Oh, okay.

SPEAKER_05 35:24

I'm opposed to that's what's happening. What uh most family caregivers are shocked is right now, Medicare has moved to a cost-sharing platform. So that here's an example. If you guys say, what does that mean? Yes, I'm gonna I'm gonna tell you. Uh, here's an example. Medicare Advantage is evil. I don't care what anybody thinks, it's evil. Um, they now have co-pays with Medicare

Medicare Advantage And Cost Sharing

SPEAKER_05 35:50

Advantage where it's $200 to $400 a day co-pay for in skilled care or rehab, and every single senior will end up in skilled care or rehab at some time. In fact, I want you to know, Jay, I actually took an insurance course. I wanted to learn what they were teaching these people who were selling insurance.

SPEAKER_03 36:19

Respectfully, dude. How do you have this much time in the day? It seems like everything something pisses you off. You dig in, do the research, figure out who the players are, and come up with your best version of a solution. Like this is like this eighth time we've just been talking about half an hour. Um, I'm an Irish girl. You yeah, yeah.

SPEAKER_05 36:44

Irish Catholic. Irish Catholic, yeah. You know, the guilt would I couldn't live with the guilt if I couldn't find a solution.

SPEAKER_03 36:50

I tell you, they I I got a big dose of guilt too. I still have it. It's a mess. We'll talk about that on our and it's such a waste.

SPEAKER_05 36:57

And I want people to know that guilt is a wasted emotion and it negates all the good we do.

SPEAKER_03 37:03

Agree.

SPEAKER_05 37:03

We gotta get rid of it. Gotta get rid of it. Here's what I learned that the government policy makers make the high deductibles and high co-pays to deter use of benefits. They actually say that in the course. That's sneaky. Uh my head exploded when I heard that, and I was I was pissed. I'm sorry. I was so sneaky. Yes. And you know what? It's working. And of course it is. Uh we have a situation right now where um there's the other thing that has just happened. We we have a hundred days of rehab or skill care. Ha ha ha. We now only have the illusion of health care, Jay. It it we don't have uh real health care unless you can pay for it privately out of pocket. Um, the reimbursement is so low for therapies in the long-term care, skilled units, and at acute rehash hospitals that the facilities are actually provided a higher level of reimbursement for not providing care.

SPEAKER_03 38:21

Therapy. Look, like I tease um my nieces and nephews when they say something silly, I say, get off my phone. Get off my phone with that madness. That is so ridiculous because we're paying more. Yeah, we're paying whatever that means, no matter if you have five dollars and you're now paying a dollar, or if you got a million dollars and you're now paying $100,000. I'm saying, as a society, we're paying more and getting less.

SPEAKER_05 38:52

Like that is well, I want you to know when I was I was so proud of how our health care system worked when I was in the 70s when I was just working. I I graduated from nursing school in 74. And in those days, Medicaid patients, if they were in a trauma center or um a big city hospital, they a teaching hospital, they got the best possible care, equivalent to what everybody on private insurance had. That's so proud. Well, it's no longer like that. In fact, it it's not, and it's not just people on Medicaid, it's managed care, it's all of those things. So uh since and and I know this is going to be something that's going to uh make people's heads explode and be angry at me, but Obamacare brought health care to our its knees. Okay. And uh the reason why, I worked for the very first review organization for private companies in the country. And I was living in Minnesota, and I had had a I was looking for something outside of the hospital because it was getting bad out there as far as you know, when you're getting physically ill before you go to work, you you shouldn't be going to work.

SPEAKER_03 40:11

You probably shouldn't, you should probably not work there any longer. If you can't, yeah, I know some something like hey, parented up comedians. I know you can't always just up and quit a job or move and be able to take care of yourself and your family, but please, I want to highlight if you see a pattern in repeat illness, sickness, migraines, diarrhea, you know, um, heartburn, look into how first what's your work environment, second, for andor your your diet. Like what it what have you is what you're eating or drinking changed? Because our body does give us signs, it tells us pretty quickly when something is off, but we have to pay attention, we have to tune in to our own intuition um um and awareness. I tell you what, we're we're God is so much to say with you and so much to ask. You gave me, you gave us, not just me, such a varied and tapestried uh journey, and we greatly appreciate it. We're starting to uh get towards the end of this conversation. I can already tell I'm gonna need to make I don't know how many more I'm gonna need with you. But what is something that a person who is either currently a family caregiver or they're they are a supporter of a caregiver? We have quite a few people like that in our community now. Um, uh Lady Die the second that want to know what they can do. They're like, I hey, I I feel helpless, but I want to help. Can you name one or two things that a person who's either currently a family caregiver or they're supporting family caregivers? Like, for instance, my best friend, she's never she does have children that are now adults, so she cared for them when they were younger, but she's never had to care for someone long term because of medical crisis. What could we what's something that the people can kind of sink their teeth into and say, you know what, it sucks, but if I do this little thing here, it might be a bit better.

Tools That Protect Caregivers

SPEAKER_05 42:33

Well, for the person as a family caregiver as yourself, yes, I recommend that they build a care, I call it a caregiver relief group. And it's really hard because caregivers have a hard time reaching out and asking for help. And that they think that everybody should know what they want and need. Nope, nope, nope, nope, nope. The first thing I encourage is putting a family caregiver contract in place. Whoa, we you buried the league.

SPEAKER_03 43:04

We should have started with that. I'm also a lawyer contractually. Yes, I love it. Okay, give me, share a little bit about how that looks or is that on your website? Like I I do have information.

SPEAKER_05 43:18

Okay, and uh, first of all, you have to look at it as a job. And I know that family caregivers like, oh no, no, no, I can't do that. I'm a I love my family member. Ha, let me tell you, you have to look at it as a job, you deserve time off on a regular basis, you deserve to, and this is a way to also think about getting paid because I help you learn about different ways you can get paid as a caregiver. But you also need to have I so many have uninvolved siblings and extended family members. And this is one thing I know everybody's gonna laugh when I say this, but one of the things that we need as we move forward is. We need to have a contract where we say, on these days, I want these days off on a regular basis. I want a week's vacation, and I expect this to be covered, these dates to be covered. And what I recommend is if you are if your siblings and unextended uh uninvolved family members do not want to physically come into the home and provide care, then they need to pay for that care while you're gone.

SPEAKER_03 44:29

Amen, my Irish sister. What? Yeah. I've never heard of something that was more practical. Yes. More fair and more clear. It's a contract. Whether you have a rent or mortgage or tuition, you got a car, you got a cell phone. All we do is marriage is a contract. Everything.

SPEAKER_05 44:53

Yes. Okay. So that's one of the things that I really strongly encourage is the family caregiver contract.

SPEAKER_04 45:01

Okay.

SPEAKER_05 45:01

And I think the second one is when you build your team, you need someone to look over you, the family caregiver. So those that support a family caregiver, you need to nudge them to make sure that they are taking care of themselves. You need to say, hey, you need to ask for help. And for those out there that think they are the only one that can provide the best possible care to your loved one, I say, get over it. I'm sorry, but you know, people may do things differently, but if they get the same result, what does it matter how they get there? And that's a big challenge for so many caregivers because they're their world gets smaller and smaller as the needs increase and they lose sight of the big picture. And there is life after caregiving. And if you don't, and I've seen this so much, I've seen women become homeless, I've seen uh family caregivers. Uh I I I lose two to three caregivers a year to either serious illness or death because they they didn't have somebody looking over them. And you know, you need to look at the big picture holistically, you want a life to go to afterwards. So if you are somebody who supports a family caregiver, you need to nudge them that they need for help. I like that.

SPEAKER_03 46:31

I like that. I'm gonna I'm gonna assign some people. I I I commend and I relish in what I call my caregiver support system, my my village. But I tell you what, I've never done is I have never kind of assigned somebody to say, hey, if I have four people that I can count on, you're in charge of making sure I'm taking my medicine and eating well. You're in charge of making sure I get away or get a vacation. So, like if everybody gets an assignment, yes, then once a month you got to check in with me. And if you don't, like, I mean, I don't know what's gonna happen, but but but the point is, I believe that they will take that responsibility seriously because you're right. There are many people, there are more people who want to do something. Now, something may vary in scope and scale, but they do want to do something to assist a person who is currently a family caregiver. I tell you, the first, the only the last couple of minutes of what you were saying, Diane, I was over here shaking my head because I thought, how the hell come I didn't come across her about 12 years ago? Because I have way too many caregiver scars and keloids and and and and and girl, I do too. I'll tell you that I look that you could have fixed. I wouldn't even had to do it if I had known you. I'd have been like, oh shit, that's that's dumb, Jay. Don't do that. But I'm I'm so encouraged by what you said. I'm so grateful that you made the time to share with us. You are welcome. Anytime if there are any new things that come up in the field uh that you think I need to know, I need to share with the caregiving community. I know that sometimes stuff, um, you're so in the middle of it, you may be you may get something hot off the press, like my grandmother used to find out what the Pope meant, and you might get it before the rest of us. So feel free to use us as an extension of your microphone. Um and let everyone know what's the best way to reach you to get your services, to get more parts of your expertise.

SPEAKER_05 48:36

Uh, it's caregiverelief.com is my website. It's all one word www.car.com. And I'm Diane at caregiverelief.com. And uh just feel I answer all my emails personally, and uh I have podcasts, I have books.

SPEAKER_03 48:59

You really are Irish Catholic. You answer. Do you have a candle on the side by your computer lit too while while you're doing it?

SPEAKER_05 49:10

Well, I you know what? I'm the kind of little old lady. I I laugh now because I uh I'll tell you a little secret. I went and got my hair cut today. And that's it looks great, by the way. Oh, thank you.

SPEAKER_03 49:20

I don't know what it was before, but this is working.

SPEAKER_05 49:23

Um, but I I came home and I realized my shirt, my blouse was on backwards. And I'm sharing that because you can dress me up, but sometimes you just can't take me out. I'm officially an old lady, but I I I feel that there's so much of my knowledge I want to share, and it's practical experience or practical knowledge that uh that nobody else is talking about out there right now.

SPEAKER_03 49:49

You're right. Yeah, thank you so very much. Thank you. And I assume that your books are all listed on caregiverelief.com. And my courses and the podcast, so we can get to everything. So, hey, parenting up, family, community, you go check her out, tell the people you know to check her out, and thanks again, Diane. Thank you, thank you.

Woe Is We Closing

SPEAKER_03 50:11

The snuggle up. Yo, lady died the second, laid it down. She put it down. It was so tough for me to really generate within my spirit. What's one big takeaway? What's the what's the one snuggle up, Jay? And you know what? It actually came spiritually from something that she said, but she didn't use these words. Caregivers. It's not woe is me. I feel so alone. I feel so burdened. I I I don't feel so needed. We got us, I got us a new phrase, not woe is me. Woe is we. We are all woeed in here together. Now, it's us. We don't have all the financial resources we need or the medical resources we need, but we do have each other. And that is why humanity, human beings, are the best living thing on the planet because we can innovate, we can create, we can change, we can modify, we can improve. Woe is we. We all woe in together. So who you gonna call to help or to ask for help? Either way it goes, you ain't in it as long. You are not in it alone. Thank you for tuning in. I mean, really, really, really, thank you so very much for tuning in. Whether you're watching this on YouTube or if you're listening on your favorite podcast audio platform. Either way, wherever you are, subscribe. Come back. That's the way you're gonna know when we do something next. Y'all know how it is. I'm Jay Smiles. I might just drop something hot in the middle of the night.