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Caregivers (Batteries Not Included) Episode Transcript

00:09 - Nachi (Host)

Welcome to another episode of I'm Not Yelling! I'm Dominican podcast hosted by Nachi and Damaris.

00:16 - Damaris (Host)

Hey guys, it's Damaris, highly favorite child of the most high, and today we're going to discuss something near and dear to our hearts and that will likely affect many of us in some form. As our parents or loved ones get older, we begin to see the role switch, and now we're in the role of a caregiver. On today's episode, we're going to dive in on the impacts of caregiving, what we can do to support caregivers, what resources are out there that you can tap into. In this conversation we have the one and only Erna Alfred-Lucas, a dear friend and advisor to me and founder of CG360. Welcome, Erna.

00:56 - Erna (Guest)

Welcome, oh, thank you, ladies. I feel very welcomed and very blessed to be amongst the most favored.

01:03 - Damaris (Host)

Oh, okay, I'm leaving, you're welcome. Oh, my gosh Well yeah, before we dive in, take a minute to introduce yourself to our listeners and for them to be more familiar with you.

01:22 - Erna (Guest)

Sure sure. So I've actually been a caregiver, an informal caregiver or family caregiver for over 20 years, but, similar to Damaris and Nachi, I lived the corporate life. I did all the corporate things, checked all the corporate boxes, but through my caregiving experience, recognized there was a need to help others who would eventually find themselves in this place, and that took me on an entrepreneurial journey that is still going on three years in right now, but it also led to my understanding and founding of CG360, which I will talk about later.

02:00 - Damaris (Host)

Awesome, Awesome. I appreciate that, I think. Diving into what you just kind of touched on lightly, what is the definition of what a caregiver is? I mean, I think everyone has their own preconceived notions of what that looks like. For some it's just like oh, that's a role in a hospital, that's someone who is a patient coordinator, something you know, someone that is hired to help my parents or grandparents. But I think that it's way much broader and also could be very unique to an individual's experience.

02:37 - Erna (Guest)

Absolutely. I think one of the reasons and I will say that I'm speaking for myself with this particular comment, but one of the reasons it was so difficult for me to consider myself a caregiver is because when I think of caregivers, I think of doctors, nurses, health assistants, healthcare assistants, people that are brought into the home to supplement the care of a loved one. However, that is exactly what unpaid family caregivers do Moms, dads, kids like myself that we don't have our own children, but we take care of older parents that are sick. So, essentially, it's just, it's a name or a phrase given to somebody who is caring for others people aside from themselves older, younger, in between doesn't matter, just caring for someone else.

03:25 - Damaris (Host)

Right, because I think naturally she is. You know, she has the task of doing the physical stuff with my mom because she loves mommy loves with her. So I would say she's a primary caregiver, but I'm still a caregiver in the sense that, well, I manage my mother's finances. So previously I don't think I would have ever considered that really to be oh yeah, I'm a caregiver. But no, I went, you know, when I was doing some research and reading upon it I was like, oh yeah, I have a caregiver too.

03:53 - Nachi (Host)

Yes it's a team effort. Even the kids. Look, even my kids, they, you know, I have my daughter doing exercises with my mom.

04:03

You, know, just to get her involved in, you know, and I'm not doing something. So giving me that free time like, hey, go go exercise with your grandmother, go walking with her, you know those are little things that I have them, do you know? That's easy for them to do, but it's necessary for for mommy right, like she needs to be active, she needs to, you know, be out there and do different things and always not having it be me.

04:32 - Erna (Guest)

Yes.

04:33 - Nachi (Host)

Because even with that, she's like when am I going to see so and so? And I'm looking at her. Like you know, I have a job right.

04:43 - Damaris (Host)

She's like but you're also my chauffeur, like girl bye.

04:49 - Erna (Guest)

You got. You got 12 jobs. That's what she's looking at you as she's like. You are on my clock.

04:54 - Damaris (Host)

Yeah, I mean my mother had a license when she was in her early 20s. She got her driver's license but never really used it because my father was her chauffeur. Only until he was that he got sick and his health declined that she was forced to drive. But yeah so that she know your place.

05:17 - Nachi (Host)

That was drastic. I already know my place.

05:21 - Erna (Guest)

I know I am her shirt.

05:23 - Nachi (Host)

Play your position Her her, her, her shaft, all of that, yes, 12 jobs, 12 jobs, that is what it is.

05:32 - Damaris (Host)

But I think that's, but you know you sharing about the kids and everything. It's nice to say like, yeah, they are the caregivers too. Like, who are the caregivers here and that's anyone participating to some extent, right?

05:45 - Nachi (Host)

Right.

05:46 - Damaris (Host)

And I didn't care yeah.

05:48 - Nachi (Host)

And it made me think when you said that when Bobby got ill and how, while we weren't in the same state with that, with him, we were still part of, you know, navigating and coordinating his care with my, with my, with our mother, because you know, that was something that we knew, that was stressful for her and it was confusing, and so we had to step in a lot of the times to even navigate the health system from afar, which is it's already difficult enough to do that when you're there. Yes, far more difficult when you're away, absolutely and so that you know. But again, it was, we didn't, I know I didn't think of myself as a caregiver, but in essence we were helping out in many different ways, supporting Tommy and that, supporting him in in that new journey of of theirs, you know, in navigating that space.

06:55

So, yeah, it definitely goes beyond, you know, physically being there or just being that one person that's providing the healthcare, but providing all sorts of you know care around the way they live their quality of life, and all of that yes.

07:16 - Erna (Guest)

I think. One last thing when people hear care, they automatically go to help. They don't think about the emotional, the financial, all like you said, nachi everything that surrounds the way they live, and that's why you have different types of caregivers. You've got your primary, you've got the person that focuses on financial. You've got people playing different positions based on what they can offer and also based on where they are.

07:44 - Damaris (Host)

Yeah, I I'm, and I know not everyone has this luxury, but I'm so grateful I had a partner in this, that being my sister. Because where I tapped in, like when they were in the process of, oh, we want to get a new apartment, and at this point my father had already a couple of strokes and I'm like, oh boy, I'm having to find a real estate agent from New York, find a real estate agent in Florida that can handle them, and I'm here interviewing them from afar and if I didn't like their vibe, I'm like, okay, you're not going to be able to you know, take my parents around to see the proper place and luckily I found this guy who was young and hungry and he just understood the assignment and he was like your father's a character.

08:31 - Nachi (Host)

But but he enjoyed him. That's a nice way of saying that. Yeah, yeah.

08:39 - Damaris (Host)

Yeah, yeah, that's my thing, but I'll make sure you get them the right place. And I'm reading the least contract Because at this point my mom never did that stuff to that degree, was my father, but at that point my father, his vision wasn't good and so it was just like okay. So now I'm having to read that on their behalf, it. You know, thinking about that and just the impact. Those years were exhausting and RIP to my father, I love him still do, but it was. It was tough. I mean the, the declining health and then having to do this from afar, and then sometimes I Would just have to go down there for weeks on end and that's just what it was. And we made it work. And then my sister, she managed the, the health care, because that is amazing itself and it is. It is just absolutely exhausting.

09:35 - Erna (Guest)

Yeah, like you, you tap into this inner reserve of strength that you don't even know you have Because you care so much for this person. But this is where it gets a lot harder, and I think COVID has shown people oh wait, there are people that do this, like their families, that do this because before, caregiving was something we didn't talk about. It was like that's your family, you take care of yourself, that's your personal circumstance. Covid blew everything up because now, all of a sudden, people are caring for their kids, they're caring for everybody at home. People are having zoom calls with older parents driving by, like literally In the background, like dropping by photo, bombing or doing whatever parents do because they're parents, and then there, the kids in the background as well.

10:21

And all of a sudden, it became very clear that this is a different world that we are living in, and while it is a different world, it was going on forever. Back in 2020, aarp released a report and it basically said one in five Americans, or 53 million Americans, were caring for an older adult or an adult child with with disabilities. So this has been going on for a minute. Covid just complicated things and probably accelerated the number of people that find themselves in this situation. But that's why this it's so important to talk about this and so important for people to recognize that, yeah, it might be happening in your family, but it really does affect everybody.

11:07 - Damaris (Host)

Yeah, I mean I, I just spoke quickly about that impact for me personally, but I don't know what you, what have you seen that are the different types of impacts to Families, to individuals, when being a caregiver. I know there's positive and there's some negative, obviously many negatives, but I do know I came across some positives. But I'm curious to hear about you, what you've seen.

11:31 - Erna (Guest)

Yeah, yeah, I can start just with my own experience. I can read a contract like nobody's business. Already had this. But let me tell you, like now it's like look out, I can read those details, pick out the fuzzy things that I'm like. No, no, no, just because so much advocating and reading and learning and educating myself about Healthcare, about insurance, about this lease, the other lease, the assisted living Agreement, the nursing home agreement, like just I can do it. It's not my favorite, but I got that but I didn't ask her that.

12:11 - Nachi (Host)

Yeah, I've mastered it and that's a good skill to have Right, it is a really good skill to have.

12:17 - Erna (Guest)

It also is helpful when it comes to advocating for your loved one. We we know that the healthcare industry overall, people are burnt out and people people aren't intentionally sloppy or bad Things happen. Just as these caregivers these formal caregivers are Are offering care to our loved ones, they also have to go home and offer care to their own loved ones. People and this system is not meant for that kind of stress on an individual. So there's a lot of things that we, as caregivers, actually we need to know and understand so that we can not only help our loved one, but also, like, help the healthcare system, help the people that are trying to do the work that are overworked. They don't have enough people because that industry is still on the decline in terms of People showing up to the hospitals and the doctor's office and doing the work. That is still going like steeply declining.

13:16

So another reason why caregiving is so important is is because of that, like there aren't going to be enough people in the Healthcare industry to care for a seriously ill loved ones when it gets to that point. So we as people have to figure this out because, regardless of whatever one stance is politically. The truth of the matter is this is already broken, so it's either gonna continue being broken or we can start to put in some safeguards to help one another out. And I think that's the other, the other effect of of just caregiving as a whole, as an individual. If you are not reaching out for help I was not then you break down. You get, because you're not only caring for your loved one, you're also holding down a job. Depending on the stress with your job, that just creates a whole other problem. If you're stubborn like myself, you don't listen, so you literally break and then you're like huh Wonder how did that happen?

14:19 - Nachi (Host)

Yeah, I want to get back to advocacy because I think that's really important and I feel that, especially our parents generation, they relied a lot on whatever the doctor.

14:33 - Erna (Guest)

Right, they don't question it.

14:35 - Nachi (Host)

They, you know, they just go by the letter of the law, like oh Dr So-so told me I need to. You know, take, take X, y andZ and.

14:44

I feel like we have to start and and I know that, you know, with our parents is a little different, but with us, our generation, we definitely have to advocate and ask those questions and you know, read up on that. You know they like to say, oh, you like to Google everything. But in all honesty, you should, right, right, I need to know what you're telling me. I need to understand, because that's another issue is that the, even when they speak to Patients or their caregivers, they're not really explaining what the the the situation is, what the problem is, what, what's needed. Yeah, it's like I Think about our cousin whose mother was in the hospital recently. I felt like they were doing all these kind of tests and he didn't even know why they were doing or what they were looking for, right, mm-hmm? And in my head I'm questioning like what are you trying to? What's?

15:45 - Damaris (Host)

the other out it's happening.

15:48 - Nachi (Host)

Like what are we doing all of these tests? Why are we, you know, taking all these labs? Like, what is the purpose? Why are we doing this? What do you think is the problem? You know, and, and I remember this lady who was sharing her story about her mother.

16:10

She was, she had Alzheimer's and she was in the nursing home and she was in verbal so she couldn't really sing when something was bothering her right, and so she asked, as her daughter, she knew there were signs that the nurses didn't catch on. That told her okay, I think she's, she's about to get an infection right, because this is what she showed me the last time it happened and I'm seeing it again. And has she not said anything? Her mother would have been suffering in silence. I always say, like then this is why I always say, you know, I and I always feel bad when I see patients in the hospital or nursing home and they don't have anyone there or don't have any family that Can really speak to them, hey, for them, oh my goodness, because so many things could go missed.

17:12

You know, like, yes, just fall through the cracks and and to your point, it's not even that they're maliciously Doing this, it's that they're overworked, they're understaffed. You know they're trying to meet these certain guidelines and criteria and Checking off these boxes just so that they can get paid. It's to keep the doors open, and you know they have to deal with all these regulations.

17:38

So it is so important I can't even emphasize how important it is for people to, you know, not only advocate for yourself, but for your love for the families and you know and even friends, because sometimes you may not have a loved one, there might be a friend, you know, like that's something that I hear a lot is that you know their children don't live in the same state and so they rely on a neighbor or friend to kind of, you know, talk, you know, on their behalf to Medical providers, because you know they're just not in that capacity to do so. So it's just, you know, that's just Something that I'm Extremely passionate about and feel it's important.

18:24 - Damaris (Host)

No, I think it's. It's those are. That's a wonderful perspective and I think if anything it should encourage people is, in particular, caregivers and obviously for yourself to be to ask the questions. Not be afraid not be afraid, because I feel like a lot of that hesitancy comes from. Well, you, you don't have this medical degree. I don't need a medical degree to tell you how I feel.

18:50 - Nachi (Host)

Right.

18:51 - Damaris (Host)

You're not in my body or you don't know my parents well enough. I've seen them for years, so I know when something's ailing them like, that exhausts me, that riles me up, and when people are just like blind, like whoa the doctors Is the doctor you.

19:07 - Nachi (Host)

Right, right Right.

19:09 - Erna (Guest)

You got to wonder. I always I know it's the particular generation because they, but even some of our people's.

19:16

you know they're all about like well, they're the expert. But to your point, Damaris, who's the expert on you? Also, what other time in your life have you actually listened to somebody else? So I'm like why are you picking this one time when you should be asking questions? Right, right, be all docile. No, I do not accept this and we would not go like this. I always wondered that. I was always like is this woman still, you know, my Like? Is this doppelganger, this copy?

19:51 - Nachi (Host)

this, not the mother, you know. I think it's fear too. You know they don't understand what it is. So it's like they're looking to that person to give them the answer. And we've been conditioned to believe that providers are have the answer and, to be honest, they don't. They're, they're, they're trying to figure it out. Yes, they learn, you know. You know they learn the process and they learn the body and all that, but they cannot tell you, and this is why they do all those tests and take all those bloodworks, because they're trying to do a process of elimination of. Okay, this is my theory of what it could be Right? So let me see, let's do this. This is my theory. Okay, it's not that one. Let me go to the next one, right? I mean, trust me because I've worked with them.

20:49 - Erna (Guest)

And and but that's like. That's how science works. Science is not exact. It is a process of elimination and experimentation and I think we forget, when it comes to doctors especially, we just assume, well, you've got that degree, you've got, you've got the knowledge. But the knowledge is something that is being acquired with each and every patient. Yes, yeah, it's not static, it continues to evolve. So it is okay, we need to ask those questions because they also need the answers but it also lets our loved ones know I'm not left here by myself.

21:24

Yes, my child or my friend or whomever is here with me, looking out for me, and that's that's really important, because they're going through something that's unknown, that's scary, every sort of every sort of feeling that not necessarily it's going to be okay, but that they are cared for, looked at, supported, exactly.

21:47 - Damaris (Host)

One of the positive impacts of being a caregiver, especially with my mom. Now she is, she shows her appreciation and I love that I'd be like all right thank you, I feel seen mom. Yeah, I feel seen, but she's like my daughters are the best. I'm like, yes, girl, yes.

22:06 - Erna (Guest)

It's really funny because you know, it's a little things yeah.

22:09 - Nachi (Host)

It's a little things like I'll give her her pill and she's like, oh God, bless you forever. You're like, yes, thank you, that's a wonderful daughter. I'm not even doing everything Like I want to do more. She appreciates it she knows she knows, she knows, I wanted us to go back and talk about mental health. You talked about being burned out as a caregiver and not asking for help. What are your thoughts Like? How can we navigate that Cause? I can definitely understand that.

22:49 - Erna (Guest)

Let me tell you, when you're in the thick of it, you can't. You can't think like I physically could do my job, could care for my mom, could get on people's cases, but I couldn't think outside of like the box that I had in front of me. And at one point I remember talking to this woman at work who was caring for her mother in China so talk about distance. I'm like, yeah, she had like staff, she had, you know, a team, but even so she still needed to be part of the day today. And she said to me I have a therapist and I'm like just one, like you should have, like based on what you told me, right. So she ended up giving me this woman's name. And you know, in our culture, like that is not a thing.

23:37

But, I was like I'm going to do this. I talked to this woman a total of three times and I swear, and she wasn't covered by insurance, I swear. In those three conversations she still wanted to go and I was like, no, I'm good, she just gave me enough room to think to let it out, but also to literally reason, like one of the things.

24:00

I saw my mom almost every day. I used to travel a lot for work. If I wasn't traveling, I was at that nursing home, at the end of the day, burning myself out.

24:08 - Damaris (Host)

Yes, you were.

24:09 - Nachi (Host)

I remember.

24:11 - Damaris (Host)

Yes, I was like you need a moment.

24:14 - Erna (Guest)

Right, I really did. But I was like, but I'm the only one I can take with that. So this woman was just like do they pay you at your job? And I said, yeah, they give me money. And she's like why don't you use some of that money to get some help? She had to boil it down because my big head was too busy.

24:38 - Damaris (Host)

Like.

24:39 - Erna (Guest)

I had like come back after come back after come back. So she finally figured out I'm going to have to get real with this woman Not listening to me.

24:48 - Nachi (Host)

So she was literally like right.

24:51 - Erna (Guest)

She was like use the thing that they put in your bank account to find some people to look after your mom. I know she's in a nursing home, but look after your mom when you're not there and even when you are there, so that you can get a little bit of time to just like regenerate, because you are not yourself, you are tired, you are always sick. You were this, you were that. Sure enough, I did that. Did I still go to the nursing home every day? Yes, but I knew. I knew that if I couldn't go or if I really needed to take like some time for myself, there were two women that went each day at different times, who would tell me what was going on with my mother, and I trusted them. They were like extended family members, they were, they knew, like.

25:39 - Nachi (Host)

I think my mom liked them more than I did, because you was probably given off this frenetic energy life. I need to get things done.

25:47 - Damaris (Host)

And bossy energy and you were like you're kind of like this mom you have. Yeah, she's probably like I don't need you. Erna, please back up. Yeah, back up, back up to the down floor.

25:56 - Erna (Guest)

Yeah, she was like why don't you go and hang out with your husband?

26:00 - Damaris (Host)

She's like I'm good, Seriously, I'm good.

26:04

No, but that's a nice segue into how do we support caregivers, because I think you were the person that provided us the resource about the rent-a-friend. That is not the name of the organization, but we did do a rent-a friend from my mother, where a woman comes twice or three times a week, spends a couple hours with her doing puzzles, taking her to the mall, walks in a park, because my sister's working full-time, the kids are in school, so otherwise my mom would just be in the house, bored out of her mind, and you know the important they say about as you age, of course, is to continue to be active, brain, physically, all that good stuff. So you know. So we did the rent-a-friend thing and it's been great, even though sometimes my mother mistakes her for the clean lady.

26:52 - Nachi (Host)

She's coming to clean? No, she's not.

26:57 - Damaris (Host)

But anyway, back to what are some of those supports, like how can we support caregivers and each other during this time?

27:05 - Erna (Guest)

Yeah, I think we start by telling our stories because I only learned about who you affectionately call the rent-a-friend, which somebody needs to come up, somebody needs to just get on the use it's trademark y'all.

27:20

It's not playing, because that's how we learned. Like, if that therapist didn't, you know, understand how stubborn I was and wrote, if she didn't break it down in the manner that she did, I would have probably, you know, been in a whole other state. So every time I interact with someone and they share their story, I think through all of the things that I've been through and what was most helpful to me. It's really one of those things where I also think about where they live, because in our country what makes it so difficult is that resources differ by state, by city, by town. So you really have to think about, all right, what is the need that the person has? What has my experience been? What's been helpful? Look for something like this. It might look a little different or be called something else where you live, but look for this. So having that conversation is one thing.

28:14

Another thing that I learned about way after my caregiving days was support groups. So there's one of the larger hospitals here in Massachusetts. They actually have a caregiver support group. They meet once a month for I think an hour, hour and a half, and they talk about everything. They're already in the hospital, so a social worker actually joins in and does some of the connecting work for the caregivers, and I'd never seen that before, I'd never heard of that before, but that immediately I thought more people need to know about this. Granted, it supports the people who are connected to the hospital.

28:54 - Nachi (Host)

Right. But, there might be other hospitals that have similar systems as well.

29:00 - Erna (Guest)

And then the last thing I would say is, or one of the last things is tap into the senior centers within your community. So every town, city, should have some sort of senior-esque place. Go there, find out what they got. Sometimes they have people that come in and visit and give little lectures. Sometimes they have resources where they can say to you you know we don't do this thing, but our state has access to these funds, and these funds are used to support caregivers in this way, so they can, like, start filling in some of the gaps for you as well. It's one of the reasons why I was able to think about how can I use technology to speed up these connections, because I was doing all of the legwork and I was just like, wow, this is a lot. On top of everything else, this is a lot. There has to be a way for us to take what we know, share it online and then keep talking about it, so that we can figure out like what are the things that work best?

30:03

Why do they work best and for whom? What situation? So if we can accelerate the flow of information between us that makes it easier for the caregiver, be it them going somewhere physically, be it them calling a number, be it them logging on to a community like my own, whatever the case, there's something for everybody. It's just a matter of pointing them in the right direction.

30:27 - Damaris (Host)

Yeah, I think you make a great point about going to the local recreation centers, senior centers because when my parents were living in South Florida and my father was at this point, he was in the assisted living facility and, like you, she was trying to go like every day and I'm like, pause, mommy, I know this is your husband of almost 50 years, but this, just you are running yourself ragged. And so one of the things I had to do some research on was I was just like what are the activities she can do to help keep her mind off of it de-stress? And there was a Tai Chi free Tai Chi classes at the center near her and we lived walking distance, but you know she drove and it was. It was great. I was like, mommy, I need you to go to this. She didn't tell her what it was because I didn't want her to say no, I was like, just go to this place at 12.15, go to this room. Yeah, no, I'm wild, I don't care, I just feel like, oh, my goodness.

31:21

She went, but she did her Tai Chi. And when I went to go visit her I did Tai Chi with her a few times, so it was great. But it was like like five old bitties, you know, just doing their Tai Chi. Yeah, and I wanted to get her into like, um, there was another center that they would play dominoes, like the seniors would play dominoes. But you know, at that point it was just uh, that's when my father got really bad. So, um, now she's in Virginia, but you know, they don't play dominoes out there.

31:50

No but we got a rent-a-friend thanks to you, arda.

31:53 - Nachi (Host)

Yes, which is wonderful to have. But like you, erna, I also had I decided to go to therapy and through therapy, and it was just, you know, an opportunity for me because I'm the you know what they call the sandwich generation, where you have, you know, you're raising children and also the caregiver of a parent. And so I did seek out therapy and she was the one actually who shared information about this organization here in Virginia and they actually have resources for caregivers, and I and I told them I was like, oh, they, they provide a stipend to help pay for certain services, and I was like I don't want to apply for this so that we can help pay for, you know, because I'm also, you know, I even spoke to her, her doctor, about adult day programs because I wasn't familiar with them and I also know how she is too right, yeah, particular she's very particular and this is what I was telling my therapist, because she was like oh, why don't you have her do?

33:15

I said um, you don't understand my mother. She, she don't really vibe with people like that. She's a wonderful, nice woman, she'll get along with you, but she would have this look like why you got me here with with these old people that's like, that's how she's like she's not their age.

33:38 - Damaris (Host)

I'm not old and it's like okay you are.

33:42 - Nachi (Host)

But all right, all right. And she was like no, there are a lot of day programs where you know they do field trips, like go to the botanical garden and I'll be like I'll show like that, you know it's it's doing stuff. So I've been looking into that and and I but it was something that I would have never have known was out there. I was amazed. I was like you giving out a stipend for this come on, this is the crazy thing.

34:13 - Erna (Guest)

Like different states do this, not all of them right different ones. So to even find out is like drama, which is why it was great that she was able to tell you she knew, so she shared that information. That that's what makes this so hard is the resources are not equitable based on which state you chose. To live in New York, like anything along the eastern seashore, there's stuff the middle of the country the stuff the west

34:47

right, maybe right that's what makes it so hard, and that is why it's so important for us to talk with each other about these things, so that we at least know what to ask for, what to look for so on that your platform does some of this kind of community building, sharing of information, can you talk a little bit more and in more detail about how 3cg 360 works?

35:13

yeah, yeah. So my, you know, cg 360 had two lives. This it's on its second life right now. The first life was all about taking the resources that we just talked about and making them available on a website. People would have to search for them. Then the pandemic happened. People are even more tired, so I decided what do people really need? Let me just ask. So the more I spoke to caregivers, the more they would say things like I just want to talk about something, about one of the issues that I'm facing, or about something that someone found that worked or didn't work. I just want to talk. So I thought, okay, I can either learn more coding which I should not or I can find a technology that I can customize and display resources, but also prompt conversation. And so that's what cg 360 is. It's a membership site, but the core portion of it, the conversation piece, is open and free to everybody, and while on there, you can not only start conversations or read about other conversations. I also put resources in there. If I find things that are national in nature, I'll share them, and even if they're not, if it's something that I feel like everybody should know.

36:29

So for the past couple of months, I've been doing these challenges health proxy. There are certain forms everybody needs to fill out and if you're not an overly litigious person, I mean I like the fine print, so I you know over and short over everything over here. If you're not like that, you need a reminder that if you are the person in charge of your parents care, you have to get a legal document that says that otherwise you won't get access to their health records. It'll be a lot harder for you to advocate for them. So I created a challenge called get your proxy on, and it was basically encouraging people to get their health proxy for their loved one and for themselves. We only think about these things when something happens or if you're fortunate and your company has like a free legal program where they'll write up your will for you know a nominal cost. They also fold in some of this stuff. It's classified as estate planning, but oftentimes we don't think about this when we're in the middle of it all it's too late.

37:35

It's too late, right? So I'm using the community as a way to like hey, low, I don't want to overstep, get all up in your business, but I do want to remind you to get this done, get this done, get your well done. There's something called the advanced directive and it, in some states, it encompasses all of these things. But the other harsh lesson I learned is there's yet another form, but there's a form that tells the doctors what you want them to do if your loved one finds themselves in a very difficult situation. This form goes into detail about do you want them to have a feeding tube, and the things that you learn in the ER. I don't recommend this, first of all. So make sure your stuff is tight, do not learn. Let me be the cautionary tale. I learned about this form in the ER. My mother was brought in, didn't know what was wrong. The ER doc on call was just like where's her post form, and I'm like I don't understand the words coming out of your mouth.

38:34 - Nachi (Host)

What is it that you want to ask? I speak English. I hate when they do that.

38:38 - Erna (Guest)

So she told me what it stood for and I'm like I don't know. I don't know this. Somehow. She miraculously made one appearance. She was like here, read this. And I'm like, of course it was all gobbly gook in doctor speak and I was just like I don't understand. I need for you to help me. This is the ER Stuff's going on. People are crying, there's all sorts of yelling.

38:57

She took two minutes, scared the heck out of me by telling me what each of the things were, and they were basically like oh, if you want a feeding tube, we're going to have to crack your loved one's chest open to put it in. If they're in this case and I'm like what my mother was over 80 at the time Basically, it's what do you want us to do in terms of heroic measures and what don't you want us to do? And if you do not fill that out, then they will do all of the things and that might not be the right thing for your loved one, depending on the state that they're in. This was something no one had ever talked about, or doctors never talked with me about this. Apparently, it's a state form and our stupid state has its own form to further complicate things, but it's moving. It's changing to the form that everybody else has. But again, these are things that we don't know. We won't know unless we share this information. So the platform is a place to get that kind of information.

39:55 - Damaris (Host)

And how does one become part of the community?

39:58 - Erna (Guest)

Well, you can visit wwwcg360.info and there's actually a page called Online Community. You can sign up for our wait list there, and then I will approve you and you will be granted access.

40:12 - Damaris (Host)

You're like the fairy godmother. Approved Approved.

40:17

No, but I highly recommend this for anyone that is a caregiver in any form. I think it's again I'm lucky I have a sister that I can. We can share the duties, but not everyone's in that position. So knowing that there's a broader community and then I also have you personally, like I have groups of friends and people that I'm close to that know my situation and have been integral in supporting in any way they can, and so, yeah, I mean I think it's a lot of information. But knowing that there's resources out there and looking, like you said, our recreation centers, senior centers locally and, like my sister said, talking to your doctor, sometimes they have their privy to information into groups and organizations that can help. So I think that's great.

41:05 - Nachi (Host)

But it's knowing those questions. Like you said, Erna, it's knowing what's out there and what to ask, Because I wouldn't have asked if my therapist didn't tell me about the adult day programs and that other organization.

41:21 - Erna (Guest)

Same. One thing we haven't talked about yet, and I don't want us to gloss over it, is the fact that some employers have invested in trying to make things a little better. They've created employee resource groups that focus on different topics. Caregiving happens to be one, especially during COVID. That is another place. If you're fortunate enough to be working for a company that has caregivers in their line of sight, that's another place that should have some resources. That's awesome, you know. Sometimes, as part of your benefits package they also have. They include things like some elder law, some kind of technology. Sometimes. Take a look at that, because that is probably another thing that is already covered that you don't have to worry about. And if they don't have one, you can be the person that starts one, or at least thinks about starting one, Right?

42:19 - Nachi (Host)

No, I have a great idea. I'm thinking like oh, let me look into that at work, and if we don't, let me put a bug in someone's ear.

42:28 - Damaris (Host)

Right, yeah, because that's the thing. And yeah, talk to your HR organization. I think that's a great point, erna. Thank you for bringing that up. Absolutely, any last thoughts suggestions?

42:41 - Erna (Guest)

Just let's keep the conversation going. We all know within our friend circles you have different types of friends. You have the friends that are stubborn, like myself. That will not help. They will be dead and living. I have learned, so there is hope we can reform ourselves. So if you know you have one of those friends that is probably doing a little bit more than they, should just reach out and say you know, there are some things that can probably help and I'm happy to pull some out for you. Or do you want to talk with someone who has been here? I'm happy to connect you with a friend. Just be that person that keeps an eye out. At the end of the day, we need to go back to the village mentality. We might be individuals, but we need a collective to make sure we don't hurt ourselves, because we are very fragile.

43:31 - Nachi (Host)

Very fragile.

43:32 - Erna (Guest)

So, let's start looking out for each other a little bit more. Yeah, absolutely that's really what I want to make sure people do moving forward.

43:41 - Damaris (Host)

I appreciate those words and those words of wisdom. Thank you so much again for joining us today, irina. As always when talking with you, I walk away feeling great about the outlook, perspectives and again with deeper insight and more info. And you can never arm yourself with enough info, or maybe sometimes you can and then go kind of crazy.

44:08

But we appreciate you and appreciate what you're doing for the community and the support and then creating those support measures. I hope this episode has helped shed light on the resources out there for caregivers. Everyone's experience is unique and we hope you all give grace and patience to those giving the care and needing the care. Lastly, there is a lot going on in this world today that is a distraction, keeping you from your purpose, so remember to do what makes you happy and keep your vibrations high. Thank you for listening and don't forget to subscribe to our channel and follow us on Instagram, tiktok and Twitter at I'mnotyelling underscore, and we look forward to talking next time. Bye, bye.