GenX: Caring for Aging Parents While Navigating Life & The US Healthcare System (Part 2)

Caring for Aging Parents: Lessons from the Sister Girl Sessions

In this episode of the Sister Girl Sessions podcast, hosts Niecee and Voni discuss their experiences and lessons learned while caring for their aging and ill mother, reflecting on the challenges faced by many in Generation X as they look after their baby boomer parents. The conversation covers the importance of thorough communication with healthcare providers, the emotional and physical toll of caregiving, maintaining dignity for the ill parent, and the necessity of proper legal and medical planning, such as power of attorney and healthcare proxies. They also highlight the value of having a support system and provide practical advice for others in similar situations.

00:00 Welcome to Sister Girl Sessions
00:59 Caring for Aging Parents: A Personal Journey
02:30 Navigating Healthcare Challenges
04:50 The Importance of Medical Records
19:14 Emotional Struggles and Family Dynamics
29:49 Maintaining Dignity in Difficult Times
30:55 Facing Harsh Realities
31:53 Navigating Medical Decisions
36:15 The Importance of Communication
37:57 Hospice and Palliative Care
43:47 Legal and Financial Preparations
50:37 The Role of Caregivers
56:16 Final Reflections and Support

Welcome to the SisterGirl Sessions, which is a SisterGirl Community where we grow together.  This goal of this channel is to be a space where we work on personal and emotional development and share experiences and lessons learned so that we can evolve to the best version of ourselves we can possibly be.

We would be honored if you decide to join the community and welcome you with open arms.

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Transcript

niecee---voni_1_12-15-2024_151242: 0:00

All right All right Hello and welcome to the sister girl Sessions My name is Niecee and i'm Voni and we have created this podcast so that we can come on and share Our life experiences, lessons learned, and just to share some laughs, of course, and it's all developed around a hopefully a good Gen X vibe. You know what I mean? So today we have a topic of caring for aging and skin. Sick parents, uh, in the gen X generation, we have a lot of baby boomers, uh, parents are living longer. And so we'd like to broach that topic because there are a lot of lessons that I've learned in the experience in that and things that we feel like we could share with, others who may be facing those same challenges. So with that, We continue with Sister Girl Session 2, Part 2, Caring for Aging Parents. We had to go, we did have to go back to the oncologist, but at this phase, we are going to most of her sessions. But there was another piece, Niecee I can't, I'm trying, I don't know, it was only a few years ago, but there was a part of it where the radiologist saw some of this stuff. I remember him asking for more tests of her because when she was doing the radiation. He could see he sees he saw some of the other stuff going on, but he couldn't really. Now, one of the other things we did, and now nowadays people talk about don't be an internet, uh, doctor. Then when we learn more, when we got the first biopsy test, We didn't understand it. Right. So one of the things that now, yes, I know they give you those tests. We asked for every document as we started going through this process. But one of my lessons was, is to go ask them to interpret that test to you. Cause I felt like after now hearing the first one and they minimized her having to do chemo or any other more scans. And then now we're here, we are, and what, what had happened was, She had cancer now in her bones and it was in her ribs. It cracked her ribs. It cracked one of her ribs. That's where the pain in the back and side was. That's where the pain in the back and side came from. And so, that's one of the things, and I will talk about, The experience just from my reflection, my personal perception, I can't not claim anything, but I started to ask myself because I've been mom with mama for years, and so she's always gone to the doctor so now, and she had been back and forth to the doctor with the. With the bronchitis and, uh, all the different respiratory issues and she had been having pain in her hips and leg and all these things. And so when you're going back and forth to the doctor all the time, and you're like, say, for instance, for the respiratory issues, if, if I had it to do over again, or I was caring for an aging parent, I'd say if my, If my loved one is going back and forth to the doctor for the same thing over and over again I will push for more. I need a deeper answer than you just continuing to prescribe this prednisone or the you know Whatever they do And the other benefit we have I just want to interject here because everybody has different levels of health care right and different. Um, um You know, benefits and things. And you know, we all do, we're in America, we deal with insurance companies, et cetera. And we were fortunate that our mother was a, a government employee had really good benefits. So it wasn't about financials. It really wasn't. And I don't even know that it wasn't about. Asking for the test to your point, right? I don't think because we didn't ask for it or did the doctor didn't describe it. It just never even went that route. I think that, okay. My own perception is that she was receiving a lot of what I call drive through healthcare. You go to the appointment, they check the box, check, check, check. What? Oh, that's happening. Well, I prescribed everybody that has that. And so you're going to get that. You know, this is what I do, you know, and, um, that's just how I feel, you know, and that's what she got. Just like the, oncologist say, Oh, I've seen this before. So this is just this and this. You're not looking at the whole person. But what I learned from that, you check at some of the boxes now on the other side of that, because I have, uh, worked in the healthcare industry, especially on the revenue side of it. I do know that. Sometimes it's not even the doctors. Okay. Sometimes it, a lot of times the doctor may have a desire to dig into something a little further, but they know that they don't really have a case that they can present to the insurance company that will be able to get it. Covered Because you know, for some of these things you're gonna have to have an authorization. Mm-hmm Everything now. Everything, now everything. Gotta have even more so now. But you know, you just office. You ain't trying to get reimbursed. Yeah. You not getting paid. Now you gotta pay for it. Where did not paying for it, you're gonna pay for it. So that's another note. You know, don't ever let anybody do anything till you know it's clear. You gotta, you gotta your insurance. So you gonna own it. You gonna own it? Yes. Mm-hmm And so, yeah, I think that was part of it too. Mm-hmm But it's just like. A couple of those things where I think we have really big opportunities in our healthcare system. You know what I mean? So yeah, we went through that. So it just like a, a big whirlwind, all these different things culminating. But I now, you know, and I think we both did a lot of research and Jack, I mean, we were all kind of, once we understood what was happening, we started looking up, none of us are clinical. Okay. We got one niece who's a nurse. I got one niece, who's a nurse. You know, she's, she's a nurse, but the rest of us aren't. And so I did, I use the internet. I went online, I went to web MD, different places to go understand that pathology report a little deeper. And that's where we understood that the type of cancer she had was aggressive. And it was fast growing, just the terminology they use now, and that's on the, on the flip side of that. Yeah. And we did. Yeah. Now we didn't know that. We didn't know that then. And even when we went back to, like you were saying to the oncologist, They were still very guarded. That's another thing. You can't always depend on what they're going to tell you in these appointments. I always say, uh, me, myself, and I recommend anybody, but I can't recommend to my health portal or my loved ones. Health information portal. They got the patient portal. They got all the notes and all that. Yes. Where they have the records and the reports. And if you have to go and request a copy of the records. Because a lot of the things I've even went to doctor's appointments on my own and they be like, Oh yeah, it's fine. Then you go look it up and they saying all kinds of stuff on the back end. Wait a minute. You didn't say that to me. Well, yeah, it happens now. You know what I'm saying, and there are references to certain diagnoses that they didn't say to you. They didn't say to me. So, you know, having access to those portals, which like you were saying, um, took us into a deeper dive into some of this terminology once we said, okay, so they said this here and this was referenced. And the interesting part to me is that after we got the diagnosis, of course they admitted her to the hospital for more tests. You know, she was mad about that. Yeah, she, you know, she didn't want to be there, especially then. And so, uh, and I, I, this is my life guys. Yes. March was the first diagnosis. This occur is a June or July. It might've been June. Is it June or July june june june june or early early july was it Zell's birthday yet Not yet. No june must have been june. Yeah, so march june. So yeah, this is where we had the little small That was a little small. We don't went no scan Radiation. She ain't even finished the little radiation treatment. She ain't even finished radiation yet the treatments so She had, it took her a while to do the pre-auths and all that to even get to the radiation. So that's part of it too. Yeah. And then once she got in there, this flared up during that time. And so now you, uh, now we tour what, which event next? So, no, I'm saying that we were at the. At the hospital and they admitted her, I had to think about where was I here? Okay, so they admitted her and they are running more tests and so they decided to do a biopsy. They wanted to go test those tissues. They wanted to find out the origination point. Yes, I know. I forgot. You just took me back. And so, they go to do this. And, um, we, they, they took it out of her, her soft tissue, of her stomach. And so with those and those tests, we had to wait, but I don't want to jump ahead because I do want to state that. At that point, because I started thinking about my mama. I'm playing all this back. I don't went back. She wanted to go home. She did. She was afraid that she might not make it home and she couldn't. By this time, she was having really a hard time walking. We had her on a walker. We had her in a wheelchair. We were calling in and ask it for different things. So my step sister, though, gave us gave us some materials that we had to deal with with our community. Yes, resources, resources. She let us use some of the things that my step mom had used during her. It was mom. I miss my mom's much love, uh, my mother's, uh, so we got her home and we got her home. They had did the test on the tissue and that's when we started diving in and looking up all this data and finding out that it was a fast spreading and all this stuff, but little did we know because even to this day, I will say in jumping in, I don't know where we, we hadn't done that. And we're new to this podcast day. So bear with us, but they. Never did really find out the origination of it of it. Never. Well, we found out by looking in her records. It was not voluntary,"volun-told" told to us, voluntarily told to us that when they went in to do the tissue, somehow the soft tissue that they tried to test. Did not work and they had to send it. They use the same, uh, biopsy that they had did on her breasts to try to figure out where the origin of the cancer was. So the one, the second, the second biopsy was unusable. They went back to the other one and then tried to use it to go figure out the location of it and to this day. We don't know. We'll tell us what that was. And so we, now we believe, I don't know how you feel. I believe it was related to her smoking in the, I don't know. Or it could have been her, I don't know where it came from, but it's, it's like there was enough in her lungs. I do too. And that's where now as you learn more, as I have learned more about cancers and, and different types of cancer. That those are types that spread and different things. I think the breast was secondary It was and now what we did see from the records is that the breast was definitely not the primary Mm hmm. We know that but we don't know where they originate cannot tell us but we couldn't find it in the records I should say but they didn't tell us almost any of that We dug into her patient portal and I asked her For all her records, because I was so upset. I'm still, as you can tell, I'm a little salty about it. The wish factor. I'll be on a wish factor. If there are any lawyers out there that feel like I got a case, get in contact. Cause I'll be like, somebody need to pay. Cause my mama did everything she could and she should have. Well, how many appointments did you count? You did a count. I did a count. All the stuff where she reported problems with her lungs. I counted them up. I have to go look at the records. It's been a while. But it was a, it was a double did 40. It was like getting admitted to the hospital. Now what I found when I audited her records, I went in and she was telling us the story. She was asking for the help. During the time it told a story and her, oh my God, it, it, it was, they were prescribing the same thing, this drive through health. That is what we do. We do what we do. Here you go. Here you go, girl. When I went through a whole big thing, when I went, I audited here records. I reached out to lawyers and they were like, well, it may be a case, but we're not going to take it. But I'm like, man, I, and I, I kind of backed off, but man, I'm like, somebody need pay. Yeah, anybody want to take the case and holler at your girl because What we experienced was not right and the most interesting part tell them about the oncology Yeah. Now that, that second visit to her after the last diagnosis. Now, I can make, I can make people feel very uncomfortable. I know I have a tendency to do that, but I'm usually very serious, probably business minded, but she could not wait. She's sitting in there. She's like, Oh, I'm so sorry. Uh, we, you know, never acknowledging that she should have, could have done anything there, honey. I came up in that, in that room. I had my list of questions and she wasn't getting out of there till she answered every single one of mine. And every time I would ask the question, she'd be like, she had her hands on her knees. She's, she's like ready to go. No, no, honey. I got a few more questions that I got for you here. And I was going to get through every one of them. And do you know? That that was the last time they never changed who my mother was assigned to as her oncologist But we never never saw that lady. They used to come up with everything in the world on why she was not there Now we could go into a whole bunch of other stuff that happened associated with that, but I don't know how appropriate I guess I would say yeah, uh, it would be to go into some of those logistics related to her treatment But there's some more to it Um, even about the oncologist that we could share, but I don't, I don't want to, uh, defame anyone without knowing. It's appropriate to say Yeah. Is what I know. Well, we were disappointed is what we were disappointed. Just say I was, I was disappointed in, and I'm gonna say this PCP or her medical group and the, and the, the cancer treatment people. The, and we left. I, I we held a little grudge. We did. I we had a little grudge. We, and this is the thing. I have referred mama to both of us. We all going to see the same doctor. I never seen her again. We know I did when I went back one time afterwards, afterwards, and I looked at her and I was talking to her and I was like, I can't do this. I can't. I just can't. I can't. I held a grudge. I know that that's what it was. And I can't trust you. You didn't take care of my mom, right? I can't trust you to take care of me now. You can't do it. So I had to go somewhere else. Yeah, you fumbled that ball. So, uh, we, we had to go, I had to leave, but it was, uh, the lessons for me, as I told you earlier, I would have wanted to be more active, uh, She was private and it was her business, but it wasn't like she wouldn't have told us or she, if we had asked, she'd probably shared it with us. And that was something that I would tell anybody. If you think that your parents are willing to tell you something, ask for it, ask them so that you can go help them navigate. Healthcare is so complex, so many things to go work from, especially if they willing to share with you, go help them dig in, um, Go show up with them. Get access to the patient portals. Go get access to the portals where you will get a lot more details, lab tests, anything referenceable. They have to put it in those portals because you know they submitting that to them insurance companies so that they can get their funds. Do it. That's where you're going to learn. Right. That is the way to get it. Yes. I don't know. That's my, that's my two cents. Just go, go get the access or go participate in it. Now some people don't want you in their business. I respect that too. Right. But if you can have a conversation with your aging or ill parent or loved one, whatever relation, they could be a friend that you might be taking care of. Ask some of those questions. Yes. And I'd say also, um, go to the appointments with them as much as possible. Um, be another if they are admitted it to the hospital. Yes. Always, always try to have somebody there with them. I recommend that 24 seven. And the reason why you don't know why when the doctors are showing up, when they're going to show up, you don't know when they come in. And me and mama used to laugh about this. We go on rotation. We go in rotation. I got one night and he's You know, we, we rotate in, but The thing you know, they not getting no rest much in there because I call it the vampires are coming in there These people doing the lab work. They're doing their job I'm not saying that but they come in so often and on their routines. I gotta do your vitals I gotta do your blood sugar. I gotta go do these things And but the thing is is that the other family members that are there with them Can be the eyes and ears and especially when they are not feeling well Things are happening around them and they are responding, but it's not with a sense of conscious response, right? They are not respond. They are just saying, okay, do whatever you need to do to help me make feel better. Nobody's asking, but what about this? Or But did you, what you said this last time, what about that? There's nobody there when that person is that sick to be that advocate for them. So you need an advocate with you, especially during these more chronic and as they're aging. Yes. I just feel like it's something you want to have. All of it. Yes. So I'm looking at my notes here and so I want to make sure we touch on The emotional aspect of it, like different facets of that. To start out, what you gonna ask? Um, what you gonna ask me? I don't tell, let me speak to it. All right. What you gonna say? The, the fear. Okay. Of losing a parent. Like I said, when I got the news, I, I about fell apart. I had so many flashes and so many things just run through my head like, what does this mean? My am I. fear because you hear about that much cancer and I had just went through this with my stepmom. You have a healthy respect for, you know, the, the, the damage it could do to the human body. And so the fear of losing your parent and being able to, uh, reconcile those feelings while still being able to be, um, Functional and supportive of the person that's dealing with it because they have their own fears and emotions. And like we said, mama, she was like, um, kind of, you know, uh, blank slate. Like she was holding it close to the vest. We would talk to her, engage with her. But when it She was going through all those major events. She would talk to us and every now and again, she gives me a little bit of her true feelings. You know, I know we'll get to that a little later, but I remember I told you about that last time she was in the hospital when they finally told her about her hip socket and stuff. And we had started to talk about, uh, power of attorney, healthcare proxies, Uh, last will testament properties doing your, uh, end of life activities. Yes. Yeah. Now we waited. That's another thing I would, I I cannot change. Hold on, man. You won't do that yet. I'm, I'm talking about the motion, the emotion of it. Okay. Sorry, I got confused. No, no body. That's what's going on with Voni Shit like opened up the Pandora's Box Voni It's the type of person that holds everything close to her vest. You talk, you could talk about it more than you will express the actual emotion of it. I don't. And so this is her, cause she'll talk about it, but the expression of the emotion. So Niecee goes into fear. I go into fix it by like fix it mode. Yeah. I fix it mode. That's me. That's my reaction. So even in that moment with Mama, I go into fix it. I didn't go, I I had to go focus on Mama. Yeah. Yeah. What was she doing? How was you doing? Okay, I gotta go tell my brothers and sisters. I kind of go into this. Other being almost so that I can step out of the emotion. Yes. I don't want to address the emotion. I feel the compassion of it. You are the more, yeah, that's what I'm saying, you're the more emotional one. Yes, yes, and um, go through the thoughts and feelings of it. Because I'm sure there's some people out there that go through the same thing as me. Yeah, and me too, same personalities. You almost feel like a, a guilt and a frustration of not being able to fix it because you want to care for them and you love them and you don't want to see them in pain and you want to take it away from them and you want to help. And, and one thing I will say is that, um, for like, we touched on it earlier, everybody handles everything differently. So while you and I, of course we live with mom. So, It was, we were her caregivers. It wasn't even really a question up for discussion. We, we doing this, but our siblings, we have a sister and two brothers and then she has a host of grandchildren and great grandchildren, great grandchildren that, you know, uh, they care, they were here, but they, it wasn't like they were in the rotation or, or doing any of those type of things. And everybody has to deal with things in their own way. And so. I will be, and Lord knows that I'm not saying anything was wrong with it, but when I went through it, it did, you know, I sit down and pause about like, where, what y'all doing? What where my sister'em at? I went, where my brothers at? We have a difficulat situation., that's the difference, that's the situation. So this is the middle child thing that needs to go through, whereas I'm the oldest. I don't even think like that Uhhuh. I'm just like, you got what you got. But these are real thoughts. These are real. No, I'm not diminishing. Love everybody. No, I'm not diminishing it just, I'm just I recognize that how you respond though. Yeah. Because you kind what y'all doing, so what you mean? No, but I be lying if I said I didn't. No. And see, and that didn't even think, that didn't come through my head. I did. It did. And and see, and I think it's just about. You know, it is birth and orders create different dynamics within the family, right? So, so we were talking about the emotional part of it and that was my fix it. Yes. I did not release any emotion. I did not, I did, I refused. I was going to fix this. That was my goal. But see, me and, me and mama, we, we, we both are emotional beings. I was a lot like her in that way. And so, uh, like where Voni would come in, like, mama, is it time to eat? Do you got to take your medicine? Mama be over there on the sidelines. So, um, my, I know they talking about me. I know. And so and my way of dealing with, I'll climb in the bed with her. That's one of the things I miss the most about. I climb in the bed with her. I be laying on her shoulder, we watch tv, you know, talk about some things, you know? Mm-hmm Just do the love thing. She, like I said, so. I got to feed you. I got to go do this. You know, I got to fix it up. I got to clean it up. I probably got that roll. So, my job. Yes, it's so, um, let me see here. Um, that's the emotion for me. It was that. And I don't know how our other siblings felt about it. I mean, I had to fix it. That was my God. Yes, that was, that was my, that was my emotion. That was a healthy no. It wasn't it's not a healthy way to look at it And I still I still I want to say I haven't grieved because I do believe I agree. Yeah Uh for her loss, but have I let it all out? No, I still don't know that I have I don't I don't know But there is a part of me that I told you before and i'm not gonna cry I'm gonna wave how much it weighs your hair to me last man Is that right behind her? I was always afraid that if I did I wouldn't come come out It Mm-hmm Mm-hmm And I just a fear, I just let it out all throughout. Yeah. And I just kind of say, Ooh, I gotta shut that down. Yeah. Because I don't want you come, you gotta be able to function through it. I want, I gotta live, I gotta, you know, I got family, I got job, I got all these things. So it was, it is a fear. It probably still is a fear that I have. It just like. When you're dealing with your parent and because it's shifted really quickly, but I can imagine that a lot of people that may end up listening to this podcast could have parents, uh, that end up, uh, going into a decline state over a long period of time. No longer. Yes. Cause ours was short. Ours was short and swift. And then the, the climb was, So how do you, you know, how do you make sure that they keep their dignity even in that declining state? Because, you know, you know, that person, my mama was a proud person. She was our queen. I tell you, you had to keep her clean. She kept herself clean. Before anybody came over, she's like, we got to go. Everything like that. That's a part of their dignity. Yes. Yes. My perspective on it is that to me, we both always made sure we respected what she wanted to ask. We, we, we asked. And, uh, we, we like, okay, well, we got to do, like you said, we tells her it was time for a shower. Let's get you, let's get your face done. You do it. You get your hair done. Let's comb your hair. Let's get you all fixed up, get your clothes tight. And it got to be a challenge. And she'd be like, I don't want y'all to have to deal with me on that. And then one day she had decided that. She was getting better and she was not going to be worried about this walker and she was going to, you know, be walking to the bathroom and stuff back, which is within our role. But you got to give her some context as to why she thought that. Now we kind of, uh, Think, think about, you know, she told me it's a dignity thing, but also she was trying to be very positive about her outcome and what she wanted to have happen. And she believed it was somewhat mind over matter. Yes. If I can go. Tell you that I can overcome this. I am going to overcome it. And that was part of how we live. That's how we live life. Yeah. And she's like, you can get through this. This is just a thing. You set your mind to it. You can do it. Right, right. Yes. And so that day she was like, she woke up one morning. Yeah. And I remember that was the morning and we about to go to work. Yes. We about to go to our offices, you know, in the home. But we ready to go to work. We get in to come see her that morning. She tells she gives us this news like this what i'm about to do i'm about to not use this walker i'm gonna walk myself back to the shower now keep in mind her hip uh now this time we didn't know it was deteriorating we didn't know how deep it had gotten until another event but We knew it was bad. She couldn't walk her. She could barely scoot her feet. Now she could use the walker and kind of help glide herself there. But she believed that morning she was going to go do me and Niecee did it. Now Niecee got this thing. Niecee got this thing where she, she blinked. If you see her, yeah, but she doing this blinking thing. All of us who know her know, uh oh, she like, she like, I understand in this situation, what are you talking about? Me and her look at each other. She blinked at me. I got my eyes. And I'm sitting here like, okay, mama. I said, now, mama, are you, this, this don't sound like a good plan. Mama. Uh, she, she, she was adamant. And so it was like that dignity part. Yeah. She was adamant that she was going to go do it. Yeah. So we had to come up with a tactic to remain, to give her Some dignity. Niecee said, you want to tell me what you say? Okay, mama, you negotiate. I'm like, okay, okay. I can understand that. But how about this? Maybe on the first round, maybe we'll leave the walker, but I'll have you hold on. I'm just going to walk with you just to make sure, just, you know, so we can make sure that when you do it, that. We are here with on our breaks or something like that. Don't do this while we, while we not in here, you know? So at that time she decided she wanted to go right then, and I walked along with her, remember to the bathroom. And she was, she made it. She did. But I know she was in a lot, she was in a lot of pain. She didn't try no more. She didn't, but we had to let her, her try. We had to let her try. She went there and she came back and her constitution said I will not have them bring me that walker. She did later, but not during that event because she was trying and it broke my heart to pieces when I had to, uh, when she was like, I'm going to walk again, you know, and I had to tell her mom when they had told her that last hospital stay, yes, that she wouldn't be able to walk anymore. She didn't take that. Away from the hospital stay. So this is again, when you, this is a really important lesson. Yes. We heard the, the, the, what was it? What was that? It was called Niecee because it was the hospitalist. It's a, uh, orthopedic surgeon. Because they were trying to understand what was happening with her hip. Yes. Yes. I think it was an orthopedic surgeon. Well, you know, they do their rotations and I was there. Were you there too? Yes. We were both there this time. So it was during the day he came through and he started telling us that he had looked at the x rays. They had done some x rays of her leg and that, uh, there was not a love cartilage or bone there to, You know, they would have to replace the whole thing, but they given her diagnosis and the stage of cancer she had being so progressive, they didn't believe it was necessarily a good idea for them to go like recreate her socket to, because of the bone, they had gotten into her bone. Now, did she associate that with walking? I don't think she did. They did say it though. They said that she won't be able to, but see, I don't know. She said it. I remember I'm saying it and I was like, man, she didn't because when I said it to her, I know, and because she kept trying to, you know, and I was so afraid and I know my mama, you know, I don't live with it for years. She would try to do stuff when you're not around your back. Yeah. She's like, shoot, I got this. I'm about to, you know, I'll be like, mama, mama, please mom. It's so, um, I had to tell her, I was like, mama, you know, you won't. You won't be able to walk.'cause we was trying to get her to use the, the, uh, the commode and the commode and the, uh, the wheelchair, the walker, whatever we could to get her around. And she didn't want to hear it and she didn't believe me. She waited till you got off work? Yeah, she did. She asked you And, uh, unfortunately. And that changed her constitution? Yep. Because she asked me to validate. She said, Voni Did, did them doctors say that I wasn't going to be able to walk? And that was the most heartbreaking thing. Heartbreaking. To have to say to her. And I, I, I still, that's one of my regrets. I wish I never told her. Oh. I feel like maybe she would have stayed a lot longer because I saw how emotionally. You never lied to her. I didn't, I don't know how. But yo, you felt like because you went and told her up front versus her asking or what do you mean? I was just afraid that she would try to do stuff. I know, you know her. That's what I'm saying. And me telling her broke her spirit a little bit. And I believe that very wholeheartedly that when you really truly believe that something You can try to overcome it. Yes. It'll cause you to hold on a little longer. And that's a little bit selfish of me because mama was in a lot of pain, but I did have a girl like maybe I shouldn't have told her. Okay. And it wouldn't have broke her spirit like that. Yeah. I just wouldn't lie to her. Now I'm not a good liar. No, I wasn't. When she asked me, I was like, yeah, mama. That's what they said. Yeah. I couldn't lie. I can't lie to my mama. Yeah. I didn't lie. But she could tell women to come tell her, but I felt like I had to tell her cause she was doing a lot. Yeah, my mama just wanted that was that part of the independent and her dignity because it gave her the, because one of the, uh, well, it just kind of surprised me too, though, because I think back on the last outing we went with her, so she does birthday cards for every person I still look at that place every time I go by. Yeah, me too. I can't go in the store. Right. I can't go in that store. But, um, Um, all the time, but, uh, go, uh, we took her out to Hallmark cards to go buy our birthday card. She didn't buy mine. She bought the August birthday card. It was, she had a, she had, she had a routine. Yeah. And it's, she kept saying it's time for me to go do my August birthday cards. Now, this is after, was it after hospitalization? Yeah. Or is it before? After it was after that was the last time she ever left. She left the house. So we got her there. It was a tough trip, but we got her there. I tried to get her to eat something. She wouldn't eat. She started not eating. And then, because I was on her about food, that was part of my fix it thing. Uh, I was trying to get her to eat, she didn't have no appetite to eat. And, or if it did, it kind of made her sick. And because the last time she was in the hospital, she did have chemo. And they had put a port in her and all that. But, that, those activities, too, were part of her dignity. That was her brand, so to say. There were certain things that Mama did. That was part of her brand. All her kids know. Her Christmas cards, her birthday cards. There were certain things that she did that you knew was mama. That was mama. When she figured out that she couldn't move about it did shift her. It did shift her. And so, I say all this to say is that there's a, there's a balancing act and it depends on the person, but allowing them to have their dignity while still keeping them safe is super important and being able to, uh, Discuss it with them because we did have good dialogues with mama and communication to me is, is key through all this. We talked a lot, even though we, I didn't feel like I talked to her because I think I have fear of it. My own self, I talked about with her. the care part of it, not the emotion side of it. I did. I used to turn against her all the time. Yeah. But she, most of the time when I try to talk about stuff, she, she, she deter it. Uh, she didn't talk a whole lot about it. Um, she might say, well, I was just thinking about what I'm going to do and, and how I'm going to live through this. You know, she won't talk about the feeling part of it. Kind of like, where are you going? Like, what am I going to do about it? Type thing. So that's kind of the way. I got it honest then. Yeah. She wouldn't, You know, cause I'd ask, you know, I've been, y'all what are you thinking, mama? You know, what you thinking? I'm usually thinking about doing, you want to know how I feel right now. Yes. And so even like, we will say that, um, when it came down to it and she couldn't really sustain herself and it wasn't really much more they could do. And, uh, when it came time for hospice and we had, uh, we had been working up to it though. We had, we had it. And I, and because I do where I worked in healthcare, And I worked around physicians, nurses, et cetera, who, who have worked in hospice and palliative and some of those designations that you will hear about people with chronic conditions, et cetera. I had them a little bit to lean on, not as, you know, just about what to ask for. What do I make sure happens? You know, they help guide me through it. And I thank God for them. What are some of those things that you have to think about? Um, what, uh, basically what should you expect from these agencies? Right. What services do they do? If somebody tells you, you are going to, uh, What they call palliative oncology services. What does that mean? What does that mean? What does that mean? Uh, is that just, and what I learned was it just means that it may not be curable always. Some people are, some people aren't, but it's managing the spread of it. So if you go on chemo, you're just trying to. Manage it to not be spreading. Yes. So you're just trying to do that. Yes So now she went on palliative care before she went on hospice. Yes. Yes, she did. Yeah And that's why I would take her to the other it wasn't the same cancer center It was a different location and I loved that team. Yes They were very now they were very direct And that's, but going through those stages, it gave, it armed us, or they, I can't, I say I might have been there present, but I was the one who was taking the information given to me by everybody, Niecee you know, Jackie, different people that I will come with my list. So that I could, because I had to report back. So we all had to be ready to report back and make sure she was the most flexible and I could flex and go and do it. And that, cause I knew, and I had, I knew what to ask. And I had people around me to go ask if I didn't understand. Right. So it was a good, I, I feel blessed that I was had that opportunity to have those resources available to me. Right. Yes. So yes, good stuff. Because when you don't know what to expect, like when, you know, we're like, are they going to come and give her a bath? We want, we expecting a bath every day. We're the people at, you know, you gotta be able to understand how they work. If she can't get up and go to the bathroom, do I have to ask for a catheter? Is that something they automatically do? It's little steps like that that you should know. Or do they provide a bed? Do they provide a little, do you remember that? Oh my God, Mama, she was like, she was sitting there like the queen she was, she was not getting in that hospital bed. She just saw this bed they brought. Now, they did put her on oxygen. Now, a lot of people would be thankful for that bed. But Mama didn't need it. Mama had an adjustable bed. Yeah, she had an adjustable bed. But I had told him bring her everything she can have. She looked at that bed. She's like, I ain't moving out of my bed. I don't know what you brought there. You might as well tell them. And she had her bed propped up when she told him. When she told him, you might as well take that cause I ain't sleeping in that. I caught Mama being bougie, like quit that girl. That's all right. But I, I told him to bring everything. I wanted everything that she had access to. So and then if she could say what she don't want and then we'll get it up out of here. That's what happened. So. Yeah, being able to know to know to ask questions and to have resource. That's why I say being an advocate as the, the, the workers that do come into your home. If you have somebody coming into your home, ask questions, ask about the medications. Yeah, that's what we did. We were like, well, I want to know everything because. What we not gonna do is just be over here flying blind, you know, and if you don't ask a lot of times They won't say anything. So being communicative. Yeah, because we did hospice in the home. Yes, we didn't send her to a facility. That was because she didn't want to. She made it very clear. I didn't want to. That she didn't want to go and you didn't want to. And I didn't either. But when we got, it got really hard to move her and we didn't know whether she needed a catheter or she, you know, we didn't know what to do, get her, get her bathed and change. And she was in really bad pain. That's when the hospice nurse came and said, well, you guys really should think about sending her to the hospital. And all we had to do is look at mama. And then we looked at her. It was like, Nope. That's not going to happen. We ain't sending her nowhere. So, uh, You're going to walk us through how we're going to do this. And we did it. And that's what, that's what happened. So it was giving her her dignity at the same time so that she could have, and she, at this time, by the time we got to hospice, we had all kind of reserved, resigned ourselves that, um, you know, it was, she, she's just, she's going to pass all the moments and everything that we had with her, uh, just manager her care. You know, what does she need? Making sure she had water, whatever she was able to partake of and, you know, help her manage through it. And so that, that leads into one of the last key points that I wanted to make sure we talked about that you talked about earlier is the The planning part of it. Oh yeah. We waited a little late. We were late and we knew better. And I better, I know better now. I still need to get my affairs in order. I got it written up. I ain't done nothing. I haven't done, I got it written up, but I need to get it in order. Never know. It's documented. It's documented. But you're right. So what we learned through that process, and we, and again. Having a network of good people around you. Yes. It's so critical. We had a, uh, uh, uh, attorney that was a neighbor who helped us. Him and his paralegal were awesome. They came in the home. They even came in our home and helped write and draft it and notarize and do all of those things. for her, but we were like at the 11th hour. That's what I would tell you. Uh, trying to get affairs and legal affairs in order. Uh, but we got it done. I'm not gonna, you should, uh, like we had to think about bank accounts and things like that too. And how, how, She did that pretty early. She did her bank stuff earlier when she was still a little bit more mobile. She added me to the accounts and stuff like that because there are certain things that you can't do Yes, when somebody's single with an account that it either goes into probate or different Yeah, i'm not trying to advise anybody but go figure out what's going on in your area And how it has to work, but in her particular account, that's what they told us would have to be done, uh, in order for us to have any, uh, access or responsibility for her affairs following we did the will, who was going to be the, uh, executor, all of those things. And she gave us insight to what she had, but she didn't have. How much it was, why she's still there and able to talk. Now what we did realize, I did realize when I tried to get her to talk about it, that was part of what she didn't want to talk about. Right. And when we started doing the healthcare proxy pieces, there are some very specific questions about resuscitation. What extents do you need to go through to extend life? She didn't really want to extend about it. Yeah. Now, by this time, she knows she could walk. She knew some of those things. She hadn't quite, everything hadn't gotten worse. I guess she wasn't just laying down in the bed. She was sitting on the side of her bed. She was up watching TV, doing different things. But when I finally got her one day, To go answer the questions. I had to kind of put the non emotional face on, ask her the questions in a way that weren't, uh, over legalized. Uh, if that makes sense. Cause sometimes the wording on the forms and things. are not as clear. And, and mom, mom was a very intelligent person. Heck yeah. But they used legal ease a lot. Yeah. Yeah. And, and just trying to re help people understand about resuscitation or mm-hmm What extent people will go through. And I'm not clinical, I'll say again, but I just, no advice. We can't give, I can't give her advice. I'm just saying, what do you want to have happen? Yes. And I just had to say yes, no, you do, you know, fill out those forms. And that was a part of all that documentation. And remember that. Another thing I learned through that process is there's a different power of attorney. For your affairs and other things. And then there's another one for your healthcare. A lot of people don't know, Oh, you got power, durable power of attorney. Yeah. Over that. But in some environments you have to have a healthcare power of attorney. Exactly. Yes. So there's different documents and things. If you have property, go talk to somebody about what you need in your state, what, you know, and, and with your, uh, your system. So that was one of our, my lessons. Don't wait till the very last minute and then, uh, be okay having those uncomfortable conversations no matter when it happens. Even if it is the 11th hour, it's still good to have done it. Yeah. Because if something were to happen to her or something before we did, before we had done all that, cause you got emotion and you got other people involved. We, yes, we, her children. All of us are her children. And yes, I'm the oldest, but it'd be without those things. No one of us had any more right to respond. You know what I mean? We're all her children. So her declaring who's going to do help make the decisions, who's, this is what I want. And I don't want, those are critical things to know about any parent or any loved one that you might know. I agree. And so it was, And even after she passed away, we still have a lot of legal things to deal with, but that made that process so easy. That is highly encouraged. So easy. You just had to go file this at the courthouse, go do the bank, this paperwork, do this, turn the keys over to the car, do all that little stuff. It was stuff to do, but it made it so much easier. It did. Thank you. So, I don't know. Did you have anything else you wanted to? Oh, I don't know. This was very, uh, Therapeutic for me a little bit. Really? Yeah. I feel like talking about and say that, you know, good. It feels good to kind of say it and, and I really hope that this helps somebody, me too, who happens upon it and listens to it. Me too. They can help'em in their journey. If they have to face this at any time in their life. I, I hope that it will be a help to them in some kind, shape, form, or fashion. Was say to Niecee though, there's a, there was a. There's a lot of stuff that we didn't get into the weeds about. We skipped a lot of time frame. But as we, uh, Niecee lived with mom 10 years. I lived with mom about, uh, what is it? Six or seven years, right? 18 to, yeah, 20, 22. So that was it. Five years. I lived with her again. Um, but through all of that, there were other events that were happening that we haven't talked about here. Uh, but as Niecee kind of said, there were things and things that later. As you went back through her health care records, you found and saw that were repeating and that we didn't know, uh, when she, I told you about that nodule or thing, we didn't know that she only has so many times that they can do this scan before they stop doing it. They'll still have you keep coming to see the pulmonologist, but you just go in there and say, how are you doing today? And they do their little, little thing and they read you and listen to your lungs and you move on. And all I would do is say, mama, how'd you, how'd you pulmonology report up? visit a go, baby, honey. I ain't got to go back for six months. You know, she's in the hospital. Yeah. And then, yeah. And then right behind it. But we just didn't know you didn't go. So that was a little things. I just wanted to add is that we didn't go into all the details, but if you, if, if, if. One day, maybe a topic will come up where we'll get to give a little bit more insight. Agree in certain areas we we're applicable. Agree. I agree. I say be aware, be as involved as much as you can. Agree. Uh, self care, that's one thing. Yes. That I feel like we didn't talk about a lot. Fair, fair point. Um, that through it all for the caregiver. Oh man. It gave me a whole different insight on that. Yes. Because it. It wears on you. It's a challenging time for you. And it's just as much emotionally challenging and physically challenging. A lot of times it's the person that's going through it. And so being able to thank goodness, it was two of us where, I don't know how I would have managed that if I was by myself, uh, but having the, The support to be able to, sometimes I could step away and have a moment to myself to meditate, to read, to just decompress, or just to veg out on the show just to try to be me for just a moment, even though I was still carrying this with me, but just go for a walk or go for a drive or do something to have a moment to myself, because especially in those last days, it got intense. And it was, um, It becomes a challenge for you and you kind of go through some emotional states and have states of depression and, uh, different things like that. And being willing to go and talk to somebody if you're not okay. Like for me, Yes, I did too. I did too, because I was super highly emotional. Uh, and it was, uh, I don't know. We talked about it a lot, but you know, I was there, uh, when my father died and he died in my arms. Uh, I was there when mama died. I wasn't there when my step mom, mom, When Momz died, uh, but I was there shortly thereafter, you know, so losing those people that you love so much is, uh, taxing on you. And mama was really, really close. Her dad, daddy, I, I didn't handle that well at all. And I made it, I didn't manage it emotionally effectively. And I went down the rabbit hole of alcoholism after that. And I was. this time that I wasn't going to lose myself in this, which after all these years, you've done so well, I've done so well, but that if that would have been a time, that could have been to fall off the wagon, as they say, it would have been after I lost my mama, you know, so I would have saw somebody. So being able to be an okay to go and see Seeing somebody and taking care of yourself and seeking help where you need it. You know, outside help, family help, talking to my, thank goodness we have a strong tribe where I had you tell them we leaned on each other. We still lean on each other. We still cry together. Yeah. You remember the time when we go in the dining room, mama's room across the way from us. We go in the dining room, like sitting over there having these real serious conversations. Yeah. Yeah. Real quiet. What are we going to do? Okay. Uh, you going to do this? I get that. Sorry. Yeah. We talk a real low. We talking low because we can't hear. But it's that, that, that support, that support. And not everybody has it. Right. And reaching out to my children and grandchildren and they held us up and held us down. And remember, we should have talked about that. Remember when Jackie and her friend got us an earlier appointment. For the palliative part. Yes. They wanted us to wait a month. They they we had before we could get her All over the place. So we and then so when I tell you we had a tribe. Oh my god, we still got a tribe We still got a tribe we still trying to hold it for mama because mama was And daddy too. I we we were just blessed with really You kind of heard us talking about, uh, in our last, uh, first episode about some of our, uh, family dynamics and our parents. And as you could tell, they ended up divorcing and things, but they gave us a really strong foundation of love. Number one was the core message about it. You couldn't be fighting. You couldn't be, you know, we fought, don't get me wrong, but they emphasize, you know, you don't fight with your family. You don't do that. But, uh, um, And a sense of family and love that we can have that. And so as, as now we kind of the elders of the, of the tribe, we carry, we try to carry that on and be that voice and with our children and, and how we raise the family. It's not even I, what I learned from all of this. And at first I didn't take on that. I didn't take, now I take a lot of responsibility for a lot of things, but until mama passed. Did I ever feel like I had that responsibility? I didn't because that was hers and she wore loud and proud and it wasn't mine to take. It wasn't mine to take. Or mine or yours. Right? She didn't have, she, she, she carried that. She wasn't the queen. Now, body more so than me, but I'm coming in a strong second. I walk with you and I don't know, but I don't feel alone with the blessing of the blessing. But even if somebody doesn't have that in their life, I say still reach out. There are free resources and things like that out there and try to get some support wherever you can talk to somebody and try to get information and support. And then if you ever have the opportunity to. Foster a family around you, whether they blood or not, then, then that communication and that support and that love of your loved ones is super important. So that's what I have to say about that. You know like Forrest Gump over here. That's all I have to say about that. This has been really good. Really, really therapeutic and healing. And I really do pray that this makes sense to somebody. Cause I know we're just talking this. And so, uh, hopefully you all receive some value from it. I think this went really well, we'll likely break it up in a series because it has gone on for a while, but I'm glad I wouldn't take it back. We got to, we got to get it through and we didn't even dig in everything. Just like Voni said, so we ask that you, uh. Hang in there with us. Keep coming back. We appreciate you stopping by. Like I spoke about earlier, I do want to create a sister girl community, a sisterhood, a place where we all come to learn and grow and evolve together. Absolutely. No, nobody is meant to walk this journey alone and even if it has to be virtual, let's do it. You know? So keep tuning in. Keep coming back. We appreciate you spending time with the sister girl sessions today and we're going to go ahead and close and you all have a great rest of your time and we'll see you on the next session. Peace. Peace.