A Daughter’s Guide To Dementia and Caregiver Burnout Recovery

Raw Intro On Caregiving Reality

0:04 Michael Mackniak: Hello and welcome to the Holding It Together Kinda podcast. I'm your host, Michael Makniak. Here we will get real on our conversations about chronic health issues, mental illness, and caregiving, and the messy reality of keeping it all balanced. No sugarcoating, no clinical jargon, just real fuck about the hospitalizations, the medication battles, and the toll it takes on a home. This is for the parents, siblings, the partners who do the impossible every single day. Holding it together kinda is a home for the overthinkers, the multitaskers, and anyone who feels like they're one-spilled coffee away from a meltdown.

0:45 Michael Mackniak: Find us on YouTube at hitkinda, H I T K-I-N-D-A. And subscribe, like, follow, comment, vent, throw rocks, or whatever you need to do, but do it today. In my world, we talk a lot about legal capacity and fiduciary duty, but there's no legal document that prepares you for the day your mom's eyes look at you and you realize that the person who taught you and nurtured you and showed you how to walk and how to protect you in the world is now somebody that you have to protect from themselves. This isn't just a role reversal, it's an identity heist of just huge proportions.

1:38 Michael Mackniak: Today I want to pull back this curtain a little bit. I want to talk about daughters turned keepers or care caregivers, as it were. The systemic invisibility that follows these people. Nobody warns you about the silence that follows a mental health crisis. When it's cancer, they bring casseroles. When it's a psychotic break or a deep bipolar spiral, you know, they stay on their side of the fence. We're talking about the trauma of losing a parent who's still sitting right in front of you. And how do you survive that new normal when the old one is basically burned to the ground?

Meet Carmen And Her Work

2:20 Michael Mackniak: Hello, everybody. Welcome back to the Holding It Together Kinda podcast. I'm Michael McNiac as usual, and joining me this week is a dynamic woman that I met in Las Vegas by the name of Carmen Jenkins. And Carmen, to start off every show, I'd like to ask my guests, what are you working on now? What's got you really jazzed up, fired up, and juiced up going on in your life or with your business or whatever right now?

2:49 SPEAKER_02: Well, that's a loaded question. It could be, it very well could be. What's going on right now? Everything. Good. What I'm working on right now is I was able to publish a self-publish a workbook in January. So now I'm working on a journal that women can utilize to help them dig deeper into themselves and expand their perspectives introspectively, looking inside and then moving out forward. And then we'll see what comes after that. You know, doing some podcasts, speaking here and there, doing some presentations, you know, that life we live.

3:26 Michael Mackniak: And here you are. And I appreciate you taking the time to join me for this one. But so talk about for a second what do you do with your business with abundant life and and and what that's all about. Uh it's it's interesting to me. And I'm sure other people will find it interesting.

3:42 SPEAKER_02: So my business is Inner Healing for Abundant Living, and I am a retired licensed clinical social worker. I worked for the federal government for a number of years. I worked for them in conjunction with being in the military. So I joined the military in 1978, right out of high school, and then spent nine and a half years on active duty. I'm in the medical field, and then consequently in the reserves after obtaining my social work degree and then my master's degree. So I was dual-headed, as they say.

4:18 SPEAKER_02: I was in the uniform sometimes as a part-time soldier in the reserves after coming off active duty and then working for the government as a civil servant. And so when I retired from the reserves, that was in 2006, I still worked for the federal government as a social worker. And then I retired from doing social work clinically in 2017. And then I opened my business in 2017. So I'm a certified life coach and I provide life coaching services for women 30 years of age and over military women veterans and mothers with the daughters.

4:51 SPEAKER_02: And people often ask me, well, how did you decide on those three areas? Because each one of those areas is the woman that I am. I'm a woman over 30. I am a military veteran, and I am a mother with a daughter.

5:05 Michael Mackniak: You also happen to be the daughter of a mother.

5:07 SPEAKER_02: Absolutely. So those are the three areas that I have an immediate affinity for and get a pleasure and enjoyment to work with other women that are in those same areas.

5:20 Michael Mackniak: Good for you. That's great. I mean, like you say, it's it's good when you enjoy what you do, and whenever you talk about what you do, with you kind of light up and and it's good to see, you know, it's nice to see somebody enjoying what they're doing. So good for you.

5:34 SPEAKER_01: Thank you.

5:35 Michael Mackniak: But one of the things that that we got talking about in Vegas at that conference was obviously the perspective that I'm trying to reach out to, and that is caregiving. And you know, my my initial focus for most of my career has been around severe and persistent mental illness and people who are struggling to maintain meaningful life in the community for adults. And lately, especially during COVID, I, you know, had a lot of everybody, I think all of us had a lot of introspection and a lot of life searching.

6:12 Michael Mackniak: And it really started to hit me about how much impact chronic long-term andor mental illnesses have on the family and what the families have to go through, including other kids that are living in the home, but the moms and dads and the split on their relationships and stuff like that. And and I'm I'm really interested in hearing caregiving stories and hacks and tricks of the trade, if you will, about that, and you coming at it from such a such a wealth of of experience through your military training, your clinical background, and now your your independent independent life coaching and things like that.

Long Distance Caregiving Starts

6:54 Michael Mackniak: Tell us about your experience as a as a caregiver, as a caregiving daughter.

7:02 SPEAKER_02: Yeah, thanks for Aston. I think it definitely fits in neatly with what I see behind you, you know, holding it together, kinda.

7:12 Michael Mackniak: Kinda, right? Because we all kinda are.

7:14 SPEAKER_02: We kinda are. We kind of try and we kind of wish we could. There's probably uh various statements that we can make related to that. Yeah, but it wasn't something that I consciously planned on. I I knew that at some point it probably would come because I am the only child that my mother birthed. And so that, you know, just kind of spoke to at some point in time, I would have some say-so and input on her end-of-life planning, as much as she would allow me to have. And fortunately, she allowed me to have a lot of say-so.

7:49 SPEAKER_02: So I also grew up watching other caregivers in my family, and that kind of gave me a sense of what the responsibility would look like. And as a military person, as a social worker, I spent a lot of time in hospitals. And so I saw a lot of families caring for their loved one in the way that they knew how, with supports that the hospital programs and services provided. So I had some background knowledge and understanding, but it's nothing like having that firsthand experience. And when I actually had to begin that process, it was sort of gradual.

8:29 SPEAKER_02: My mother was pretty high-functioning. She worked and you know, had a career and so forth. But as her health started to decline, she needed supports. And the first challenge came because we had geographical distance. She was in Ohio and I was in Maryland. And so a lot of things we did back that time that wasn't virtual. So a lot of things we did telephonically. I had a lot of conversations with her providers, her doctors. And then we began processes of me taking on responsibility on paper for her bank accounts and you know, being able to schedule appointments for her and things of that sort.

9:09 SPEAKER_02: And so that went on for a couple of years until it got to the point where she wasn't able to navigate those things, even with my assistance. And she needed some physical supports. So my spouse and I moved her from Ohio. She was living in Cleveland, Ohio, which is where I'm from, to Maryland, where we're living. And the plan was for her to stay with us until end of life. But unexpectedly, her end of life came quite sooner than we anticipated. She was with us only for about two years. Um two years is still quite a long time.

9:47 SPEAKER_02: It's a long time, but it's it's a short time when you're planning on a longer duration of life. Sure, sure. We had two children at the time and they were young. So it definitely had its impact on our family unit and took a toll on each one of us in different ways.

Moving Mom In Changes Everything

10:03 SPEAKER_02: Our children were at that time, middle school and and high school. And so it definitely put a strain on the family.

10:13 Michael Mackniak: And that's something that is honest and it's it's forthright. And I think that that a lot of people feel that way, and they feel a lot of guilt that they feel that way, that they are acknowledging that this is strain straining me and my family, and and I shouldn't feel this way. I should just suck it up because it to for me to feel the strain is bad. Does that make sense? In other words, there's a guilt, resentment, anything like that, that families who are in the caregiving positions often feel.

10:48 Michael Mackniak: And in and it's very, very normal, it's very natural. It's a we're human beings, you know.

10:55 SPEAKER_02: Yeah, I for myself, I as I tend to do in those younger stages of my life, just kind of power through difficult times. And so some of that I learned from the military as well. Uh, you suck it up and you drive on, as I say. So that the emotional aspect of things for me really didn't come until after my mother passed. But the emotional experiences were very tangible for our children. We have a son and a daughter, and their different personalities and ways of dealing with grief and loss were different.

11:33 SPEAKER_02: And so their expressions of the disruptions were very poignant, very, very visible visible and very sometimes visceral.

11:47 Michael Mackniak: Really, really. Well, I mean, it's so we bring up a bunch of points. Number one, you were talking about initially you were transient. You know, you were in in Maryland, your mom was in Cleveland, and that is a big reality of society today. We are a transient society, we are not in one place. Things like this call, right? Talking over Zoom make things somewhat easier, but but but that is a big part of some of the things that we need to overcome. And as I said earlier, I've always been interested in the other kids that are in the house.

12:25 Michael Mackniak: So if you're a mom and dad raising a kid that has mental illness or specialized needs, what is the impact on the other children in the home? Because most, if not 90% of your attention is going to the child who has a special need. And here you're bringing up a really interesting point about seeing, especially with your background, seeing how it how your mother's failing health, etc., in your home had an impact, not so much on you because of your military training and plowing your way through it, but uh describe some of of what you saw so other people might recognize some of the things you saw in your kids.

13:05 Michael Mackniak: And you don't have to specify exactly, but or who you know it's gonna be uh educational for people, yeah, for sure.

13:13 SPEAKER_02: So it did have a toll on me as well, but I would say that the the biggest impact came after her her passing. What initially began to take place is you know, our son at the time he was young, and so he really didn't handle anticipatory death very well. And so he really kind of wanted nothing to do with the caretaking of his grandmother. You know, there would be times where I would say, you know, take her plate upstairs or you know, go get her a glass of water, and he would kind of, as teenagers do, you know, shrug and huff and puff, kind of, do I have to do it?

13:47 SPEAKER_02: You gotta do everything around here and and kind of, you know, just be very disgruntled to the point where sometimes he just wouldn't do it.

13:55 SPEAKER_01: Right, right, right.

13:57 SPEAKER_02: His sister, on the other hand, they're about five years apart, you know. So she was a little apprehensive, but she would still be of somewhat of assistance. But I was trying to be very mindful of not making them feel like it was their responsibility in any way. And so uh hopefully that helped somewhat. So the brunt of the load, so to speak, fell on myself and my husband, and we both worked as well. So we were not home full time. And so for an initial period of time, my mother was okay being at home alone, as long as we kind of prepared some things for her and she could have easy access to things.

14:36 SPEAKER_02: You know, we would help her do some things before we left home and then when we got back home. But then it got to the point where she wasn't able to be home alone very long. And so we had to get caregiving services. So that was another layer and another aspect. And with her insurance, she had state insurance, so she didn't have a lot of additional financial resources. So we had to go through the state systems and apply for those resources and services. Unfortunately, in the area where we're living, they were pretty good.

Insurance Barriers And State Resources

15:08 SPEAKER_02: So we were able to get some adult care through the Center of Aging and the Department of Social Services for older adults, geriatric adults. And we were able to get some in-home care a couple of times a week.

15:23 Michael Mackniak: So that's good.

15:24 SPEAKER_02: That offset we had to do. And then it got to a point where that wasn't enough because she needed more services than what the systems could provide. And so fortunately, there were a few persons from my church that were willing to help. I mean, they would come and prepare meals for her and sat with her for a little while and things of that nature. But then when it got to the point where her health declined further, then we had to begin to look at other types of services where they were going to require inpatient care.

15:57 SPEAKER_02: And then we did that for a while with the hope that she would be able to come back home, but her health didn't sustain. She came home for a brief period of time, but then we had to place her in nursing home care.

16:09 Michael Mackniak: Right. Um when you were when you were going through, first of all, let's get back to the second to the conversation with your with your children, because this came up in a conversation that I had with uh another woman. In fact, I'd spoken to her several times and it came up again last night, as a matter of fact. And I think you you bring up an important point where you had a conversation with your kids and said to them, I'm the daughter, this is my mom. I feel a personal obligation, whatever you want to call it, however you want to label it, but I need to take care of my mom.

16:43 Michael Mackniak: I want you children to know that I want you to have a life, I want you to be kids. This is not your responsibility to the extent you want to be part of it. Thank you. I appreciate it. To the extent that you can't or won't or don't want to, I have to accept that and understand that as well. Is that more or less summing it up?

17:02 SPEAKER_02: We didn't have the direct conversation. No, I know, but but I'm trying to summarize an intuitive thing that they knew, but what was communicated to them was that they still were going to continue to do the things that they were accustomed to doing. And there if there came a time where we could no longer be in two places at one time, so to speak, sometimes three places, then we would have to look at, you know, outside supports. So again, fortunately, we had enough wraparound services with friends because family was distant.

17:39 SPEAKER_02: They were in Ohio, they were in Cleveland, immediate family. But we had developed a secondary family in the area where we live. And so there were people that we could reach out to. So that helped.

17:51 Michael Mackniak: And you're very lucky in that regard. How did you find it? And again, your background may have helped you with this, but you know, a lot of people are up against that, that run into that entitlements and resource wall and just don't even know where to start. They, I mean, it it is daunting. It is what's the difference between Medicaid and Medicare? What about private insurance? What's tertiary insurance? On and on and on we go. How did you personally know about how to deal with that and navigate those systems?

18:25 Michael Mackniak: Or did you get help, or did you have a background through the military, et cetera?

18:30 SPEAKER_02: I had some background from working in the hospital systems, both private and government, but a lot of it was just research. I knew from the services that my mother was receiving prior to her relocating what she was going to need, but I had to do my own research about what the local services were in the city where we're living. I knew enough that there were services available. I didn't always know what agency would provide those services. So I started with what I thought made the most sense, and that was the Department of Social Services.

19:04 SPEAKER_02: And then they guided me further as to where to go from there.

19:08 Michael Mackniak: There were some services agency or state?

19:14 SPEAKER_02: Every every city has a local department of social services.

19:16 Michael Mackniak: So yeah. That's good to know because you know, I know our Connecticut, small small state as well. Not all of our cities have a social worker on. I mean, some some of the wealthier towns do. But I think that you're right. I think that the So Department of Social Services is a really good place for people to start, and they have a lot of hotlines, the 211 hotline that you know, where you can call in and and I don't know if 211 is the right, the right number, but you can call up and say, here's what I'm facing.

19:48 Michael Mackniak: And there are resources that they can help you with. You mentioned the area agencies on aging and other jury, you know, elderly protective services. Those are all really good pieces of advice that for you to give that you're giving people to help them to help their loved one. And that's that's what this is really all about.

20:08 SPEAKER_02: Yeah, I just have to start, you know, with the basics. You start with, you know, if you're not really sure, the agency that helps children, even they would be able to make a referral and tell you where to call. So every city, even if it's a small rural area, has some office that's responsible for the welfare of children.

20:31 SPEAKER_01: Yes.

20:31 SPEAKER_02: Um, so even if you caught there, they could tell you where the adult office is located. And then it just kind of mushrooms out from there. There's always sometimes the possibility that they're going to recommend services that one would have to pay for. And you would just have to verbalize, no, I don't have the resources financially for that. And then they will let you know what would be available through the city and state. That requires the person being registered in that area having some type of identification card, whether it's a driver's license or a state ID card, something that they can prove that they're a resident.

21:09 SPEAKER_02: Sometimes they want them to have a bill in their name, which sometimes is a little challenging.

21:13 Michael Mackniak: Yeah, it can be. You're right.

21:15 SPEAKER_02: Yeah, but they'll let you know what their requirements are. And generally, sometimes the challenges can be now because this was years ago. My mother passed away in 2011. So things have drastically changed even since then.

21:28 SPEAKER_01: Sure, sure they have.

21:29 SPEAKER_02: There's always some red tape, there's always some requirements, there's always paperwork upon paperwork upon paperwork upon paperwork.

21:36 Michael Mackniak: I mean, you talk about having to push through and gut it out, right? I mean, that is an understatement.

21:44 Michael Mackniak: But you know, and to your next point, other things. To your next point was you had this community of second family, of friends that were surrounding you and were willing to help out, which I'll tell you, you're very Lucky, and I'm I'm sure you you know that because so often we talk about this on this podcast a lot, you know, people are out there and they're they're willing to help. I think I think it's human nature. I'm the guy that thinks that people are genuinely genuinely nice and want to help other people, but a lot of us I think are afraid to ask for the help that we need.

22:23 Michael Mackniak: So I'm curious about how that looked. And you said that you were part of a church community, which is always a great resource for people to find, you know, willing, charitable. I mean, it's the nature of church-going people, is they want to be charitable and and and give of themselves abundantly, as you like to say. So, how did that look? Did you reach out? Did you ask? Did they offer? Was it volunteer? All of those things.

22:51 SPEAKER_02: Okay, great.

Asking For Specific Help

22:52 SPEAKER_02: Those things. Um, they were very much aware that my mother was coming to live with me, and they were, you know, as long as she was able, she would attend church with me. So they got to meet her, got to know her a little bit, and I knew those that would be able to be of assistance. And then I asked and they agreed and they volunteered, you know, so it was no financial exchange involved, but there were in-kind services. They would, you know, would come here, help her with things, and then I would help them with things that I could help out with.

23:22 SPEAKER_02: Uh so kind of like a barter system, right? So that was, you know, kind of how we established the agreement or the contract. I'll do some things for you, you do some things for me.

23:34 Michael Mackniak: Yeah, you scratch my back, I'll scratch yours.

23:36 SPEAKER_02: Yeah, yeah.

23:37 Michael Mackniak: Did you find because this came up in a conversation I had with a Joanne Chaefer? You might have met her in Vegas too. She wrote that book on grief. Anyway, she said that one of the most important things to do is to be specific about the help that you need, or specific about the help that you want to give, as opposed to being just yeah, I could really use some help and leave it at that. It's yes, I could really use some help if somebody can come and sit with my mother for a half an hour so I can take a shower.

24:09 Michael Mackniak: I don't know, you name it. Did you find that to be true?

24:12 SPEAKER_02: Absolutely. Uh, because you you need to sort of, you know, uh assess who has the skills to provide the service. And so there were very specific things that we did that someone else was going to need to duplicate, cook her a meal every now and then. And they may have had to help her bathe, they may have had to, you know, give her her medicine. So they had to be able to follow through with those things. And so the people that I asked, I knew were people that could do those things.

Care Navigator Journal Break

24:45 Michael Mackniak: We'll get back to our conversation in just a minute, but I want to take a second to talk about something that many of us in this community deal with every single day, and that's the mental load of caregiving. If you're like me, your brain is probably filled with appointment dates, medication schedules, and a never-ending list of questions for doctors. It's exhausting trying to keep it all in your head while also trying to show up emotionally for the person you love. That's exactly why the team at the Care Coalition created the Care Navigator Journal.

25:16 Michael Mackniak: This is not just another notebook. It's a tool specifically designed to help you to stay organized and more importantly, to help you feel a little more in control when things start feeling really chaotic. It gives you a dedicated space to track medical updates, manage daily tasks, and even process your own thoughts. Imagine such a thing. Your well-being matters just as much as the person that you're caring for. If you're feeling overwhelmed and looking for a way to stay organized, I highly recommend picking one up.

25:51 Michael Mackniak: You can find it right now at www.carecoalition.org slash holding it together. Again, that's carecoalition.org slash holding it together. It's a small way to start holding it all together, one page at a time. All right, let's get back to the show.

The Decision To Stop Traveling

26:16 Michael Mackniak: How did the conversation go with your spouse and and family to the extent that there was one about hey, it's time that we have to move grandma into the house here because she's failing and we need to be there to help her?

26:28 SPEAKER_02: That was kind of it.

26:30 Michael Mackniak: That was it. That was the conversation.

26:33 SPEAKER_02: Yeah, that was kind of it. I had, you know, gotten to the point where I was traveling from Maryland to Ohio, which is about a five and a half hour drive one way. That is. And I would do that once a month for a while. I did that for many months. And then sometimes when she would have medical appointments, I would take off work and I would go back to be there for her appointments or to help her refile for her Medicare and things of that nature. So when it got to the point where those things needed to be transferred here, because I wasn't going to be able to keep traveling back and forth, and she wasn't physically going to be able to go to those offices alone or even with me, then it was the decision made to move here.

27:13 SPEAKER_02: And some of it had to do with where she was living and her not being able to manage her bills and things of that nature. So we did the distance support as long as we could. And then it got to the point where she had to physically come with us.

27:27 Michael Mackniak: Yeah, yeah. Well, I you know, obviously, no two stories are the same, you know, and and you could have, under some circumstances, they could do the distance thing for a long period of time, and sometimes it's nope. This is we're we're at the we're at the turning point here. Talk about, especially given your your career and your specialty, you must have been able to do a lot of introspection about what it meant to you in a positive way to develop that relationship with your mom at the end of her life.

28:07 Michael Mackniak: And for you and growth personally, like flexing muscles that you never even knew you had. Have you have you given that any thought or considered any of that?

28:17 SPEAKER_02: Uh I not so much about the flexing muscle piece.

28:21 SPEAKER_01: Yeah, yeah.

28:22 SPEAKER_02: I think that's just who I am in general. Um, but the the conversations with her about our relationship were pretty much ongoing anyway. The older I got, the closer we became. And so as we were in physical proximity of one another again, uh we had spent many, many years apart over 30-something years, because I was in the military and then I lived in a different state.

Role Reversal And Dementia Conflict

28:52 SPEAKER_02: But when she came to live with us, it was more of an adjustment for her than it was for us, because she gave up everything that was hers pretty much. She was able to bring some of her furniture and some of her clothing and some of her, you know, personable items, but she sacrificed and gave up a lot. She was moving into someone else's home. And so the freedom that she had and the decision making and all those things began to fall on me. So there was a reversal of roles.

29:23 SPEAKER_01: Right.

29:23 SPEAKER_02: And the challenges were definitely in that. I was still the daughter, but still had to be her spokesperson and had to be the decision maker in a lot of ways. Didn't always go well.

29:37 Michael Mackniak: All right. Well, that's kind of what I was thinking in my head, right? So you have, you know, we have that um that delicate balance in our relationship with our parents sometimes. And we have this boundary things, these unspoken boundaries. And here you went from the protected to the protector. And so that in and of itself has to be tough. And one of the things that you just brought to mind is, you know, you hear about how hard it is for people to give up their license or for kids to say to their parents, it's done, you can't, we can't have you driving anymore.

30:10 Michael Mackniak: Because it's that loss of that autonomy. So it sounds like your mom was pretty lucid right till the very end there when she knew that you know, would participated in these discussions and was these decisions. So you're lucky in that regard.

30:27 SPEAKER_02: Yeah, well, she was diagnosed with dementia. Um she wasn't completely lucid till the end, and she had a lung condition. And so the the two primary declining errors of her health were her mental capacity and her breathing capacity, and so it was definitely straining in the regard of there would be times where she would want to do things and make decisions, but they weren't rational and they weren't sound and they weren't safe. That's why so she would want to, you know, argue about who's in control, so to speak.

31:06 SPEAKER_02: And, you know, and there were times where I'm sure she felt childlike, as if I was treating her like a child. And there may have been times where I probably did because of safety reasons. There was one time where my mother got lost. Uh we had uh gotten up that morning, prepared to go to work, and this was before we realized that she couldn't be left home by herself. I left first, my spouse left next, and for whatever reason, I don't think he was going to be gone the whole time. He circled back and she wasn't here.

31:44 SPEAKER_02: And just like that quick? Well, it wasn't like quick, it might have been an hour or so. All right, okay. Because he didn't work that far away. He worked about 20 minutes from our home.

31:54 SPEAKER_01: Yeah.

31:55 SPEAKER_02: And so, and it's been so long away, I don't remember all the details. But he came back and she wasn't here, and so he called me at work, you know, asking if I had spoken with her when's the last time, and I, you know, had that conversation. And so he went out to look for her, and this was in the winter. And so we had to call the police department to help us to look for her. And thanks be unto God, we were able to find her, but ultimately my mother had been gone for about an hour. Where did she go?

32:24 SPEAKER_02: I'm not sure where she went. I wasn't here. By the time I got home, which was about an hour or so later, she was here. Wow. The police had brought her back, and so she wasn't too far from the house. And you know, to try to describe exactly where she was, she was within our housing area, I'll just put it that way. Yeah, yeah. But she was wandering, but my husband couldn't find her.

32:46 Michael Mackniak: Right.

32:46 SPEAKER_02: And she still had her house clothes, her bed clothes on.

32:49 Michael Mackniak: Really?

32:50 SPEAKER_02: She wasn't clothed and prepared to be outside. And that was sort of the turning point and decline in her health. Her mental capacity after that time really started to decline, and her physical health started to decline. So surely my husband felt guilty. He felt some grief about that. He felt like it was his fault and he was responsible for her getting out. But it wasn't his fault, but you know, he that's how he felt about it.

33:14 Michael Mackniak: Well, I think that's a natural thing for any of us to feel. Well, sure. Of course. I I can't blame him for feeling that way. And and I think it would be odd if he didn't feel that way. But at the same time, it's like we know you didn't like put her outside and like you do with your cat, right? We didn't put him outside and put her outside and close the door. It's just amazing to me where it came into her consciousness to go for a walk in her bed clothes.

33:43 SPEAKER_02: I don't think it wasn't her consciousness.

33:44 Michael Mackniak: Yeah.

33:45 SPEAKER_02: The dementia was such a disoriented. Yeah.

33:47 Michael Mackniak: Yeah.

33:47 SPEAKER_02: She could have been thinking she was going to the bathroom, the closet, who knows? You know, it's no that's one of the mysteries. We never always understand the mind of someone that has dementia.

33:59 SPEAKER_01: No.

34:00 SPEAKER_02: And she wasn't able to tell us exactly where she thought she was going. No. So, but you know, that caused some disruption in our marriage, as well as being her caregivers.

When Safety Becomes The Turning Point

34:10 SPEAKER_02: It caused some some challenges and friction in our relationship. So there were a lot of layers and a lot of upheaval.

34:20 Michael Mackniak: And that's, I think that's kind of what I was getting at earlier. You know, you have this responsibility that you feel, and rightfully so. And yeah, I mean, it can really put a lot of pressure. I I mean, pressure on marriage for sure. So I I think that one of the things that I try to do in these conversations is to let people know that if you are feeling this way or you're having these experiences, you're not alone, you're not abnormal. This is part of the human condition. You know, there is finger pointing, there is guilt on both sides, or all sides, and I mean including your kids here.

35:00 Michael Mackniak: We have to be sensitive to your mother not wanting to be treated like a child, but it's sometimes unfortunately, she had to be treated like a child, too, because she could get lost trying to find the bathroom, and that's a sad reality. And I just I'm just so happy that you had and such a background that you probably could really compartmentalize it in the in the appropriate appropriate place and understand it on that level.

35:30 SPEAKER_02: Yeah, it hopefully I did. You're still thinking about it, but I compartmentalized things at the time, yeah, yeah. But yeah, I'm sure that some of my background definitely was an asset, but then it was also, you know, I would say a deficit, because sometimes when you know a lot and you're not able to come through in the way that you want, then that can be pressure as well.

35:55 Michael Mackniak: And guilt.

35:56 SPEAKER_02: You know, so we we all had our stages of grief that we went through in different ways.

36:02 Michael Mackniak: That was the next question I was gonna ask you about is is the the stages of grief, and I mean, it sounds like you knew that your mom was at life's end, right? And you had already made end of life discussions and preparations, and yet here you were with her every day in your home.

End Of Life Choices And Family Pushback

36:23 Michael Mackniak: And and how I mean, what is that like to love that person who is not the person you knew? It's you know, she's a different person cognitively at the very least, and on some level, mourning that loss that isn't hasn't even really happened yet. Does that make sense?

36:43 SPEAKER_02: Yeah, it does. I again, I think in a way, uh, the preparation for me was there. I had you know, had those conversations with my mother, being her only child. And so we had power of attorneys and we had wills and we had all those documents uh prepared, even took her to the point of she wanted to pick out her own casket and make her own funeral arrangements. So we had done all of that. So she and I sort of knew some of the logistical things of what was going to take place, but not the timing of those things.

37:16 SPEAKER_02: And so, you know, it's one thing to be on the administrative end of things, I feel. It's another thing to have to actually make those end-of-life decisions. And I had to actually do that as well. I had to have those conversations with the medical providers and with her about how much more could be done and what she wanted to have done. And when enough was enough. And so she communicated to me what she would be willing to receive and what she did not want to have happen. And when we got to that point, then I had to communicate that to the medical staff.

37:51 SPEAKER_02: And all of that is more than anyone I really think can be prepared for.

37:57 Michael Mackniak: So you can prepare in terms of having the legal documents all drafted, but when it comes time to saying those words to the doctor, it's gotta be a tough thing altogether.

38:06 SPEAKER_02: Yeah, even with having the documents though, having conversations with other family members can be difficult. There are things that they will disagree on. Absolutely. So you can have things on paper, but still there are challenges and had experience with all of those. There were things that her sister thought were, you know, good and necessary and things that she didn't. But I had to make the final decisions. So I thought it's all tough. It's all tough. Yeah. But I all along the way wanted to give my mother the best possible care that she could receive.

38:45 SPEAKER_02: And I'm sure there are some times that I did well and sometimes I didn't do well. No, but you did, I, you know, and I say this too.

38:52 Michael Mackniak: If if you in your gut feel like you're making the right decision for your mom or for whoever whoever you're caring for, and you you you've been you've done the soul searching, you've had the conversations with your mom, and you are from your gut thinking that you're doing the right thing, then you're doing the right thing. That's I I honestly believe that. And it's very difficult, as you just alluded to, when you have the the relatives that are surrounding you and chiming in, chirping in one ear, this one in this one, this one in the other ear.

39:23 Michael Mackniak: You know, it's it's that could be really difficult, especially when it's ultimately you, and then feeling like you're getting the stink eye from the from the relative that disagreed with you for whatever it may be, right?

39:37 SPEAKER_02: Yeah, it's it's helpful if you can have at least one person that's in your corner.

39:41 Michael Mackniak: I oh gosh, I would hope so.

39:43 SPEAKER_02: Yeah, that doesn't happen for people. No, so you you have to make the best decision that you can at the time. And it it sometimes goes against a lot of different things, a lot of other perspectives and views, and even maybe morals and ethics. The hardest part was watching my mother actually pass away, and I was there when she did.

Witnessing Death And Living With Grief

40:05 SPEAKER_02: So, you know, I think that again, you can watch movies, you can, you know, be with other people, you can have conversations about it, but that in the moment, experience is something that sometimes people can never really describe, even the after effects of that. You know, there's times I still think about it and question myself and second guess myself.

40:28 Michael Mackniak: My friend, my friend was very close with his grandmother, very, very close relationship. She basically raised him. And I remember he he said that one of the hardest things he had to do was be there for her for the last few days while she was. And he's this was the word he used, and I'd never heard it, and I I think it's a fantastic way to describe it. He said, I'm I'm watching her act, I'm she's actively dying, which was just such a I don't know why that terminology just really hit me. It's like that's what it is.

40:57 Michael Mackniak: Yeah, yeah, I've never heard that one before, but it's really a powerful. I mean, it it it encaptures it encapsulates everything, right? And the actively dying.

41:08 SPEAKER_02: It's it's a because there's you know, I don't I don't want to trigger anyone by saying specific things, but there's stages of dying. And when you're the one that's present for those, it it has an impact on you, and it's something to never forget.

41:23 Michael Mackniak: Yeah. And and in some ways it's beautiful, I assume. In some ways it's very, very, very sorrowful. Is that accurate? And there's mixed emotions.

41:33 SPEAKER_02: I'm yeah, sure.

41:34 Michael Mackniak: Yeah. Well, I mean, I one other thing that I wanted to touch on is the generational aspect of things. I mean, it sounds like your mom, my dad were probably about the same age. My dad's 84 now.

41:49 SPEAKER_02: I don't know how this year.

41:51 Michael Mackniak: She was still that's kind of where I figured we were all in right in that same wheelhouse. And my dad and my mother, but she's just she's too, I don't know, she can't be bothered, but she would if I sat her down and said, let's talk about this. But my father and and his brother, and that generation is willing to talk about this stuff. My grandmother, right, was in that generation was absolutely not. So I'm happy that that worm is turned a little bit and that people are willing, or at least we kids, older kids now, we kids are willing to have the conversation with our parents and engage in it, and they're willing to have that engagement and that trust with us because guess what, Carmen?

42:44 Michael Mackniak: You are the one that's gonna be, you know, the doctors are gonna go to you first and say, What do you want to do? You're the daughter. So I think that that knowledge is real power, don't you think?

42:56 SPEAKER_02: Yeah, absolutely. And and and again, I, you know, came from a family where those were conversations they were willing to have, but there are other conversations they weren't. So we talked a lot about future and end-of-life planning and financial planning and various kinds of things, right? So that wasn't a odd conversation to have, but it still a tough one to have.

43:19 Michael Mackniak: Of course. Yeah, yeah. No, none of this is easy stuff. But so how do people find you, Carmen?

How To Find Carmen

43:25 Michael Mackniak: How do people find you and and get involved with your program and what you're doing to help out so many women?

43:31 SPEAKER_02: Yeah, so I help women, you know, with relationships, with making sure that they're living the lives that they desire to live. We have a lot of things pulling at us. The easiest way to find me is through social media. I have a website, it's www.ihthenumberal.com, and that stands for inner healing for abundant living. The QR code is on the screen. It'll be a long time to figure that one out.

44:01 Michael Mackniak: I H4A L. And now I now it's like oh how dumb. But yeah, and you have on the screen you have a QR code.

44:08 SPEAKER_02: Yeah, the QR code is a quick way for women to find me, and that's a free download that they can download for free. And it's just going to ask them for an email address so that I can stay in touch with them. I reach out to women twice a month and provide them with ongoing information and supports. But the QR code will give them a strategic plan for abundant living. I believe in having women take a look at every area of their life. So there's about eight categories that it will help them to assess and give them some planning steps to move forward.

44:37 SPEAKER_02: And in that, they may actually add in some things related to caregiving and some things. I was gonna ask you that. Yeah, to their other aspects of their household because family is one of the areas that they would assess. And then I'm on social medias, Carmen R. Jenkins. I'm on LinkedIn, I'm on Facebook, I'm on TikTok, I'm on Instagram.

44:58 Michael Mackniak: She's floating around conferences with miss personality. She's she's she's bad.

45:04 SPEAKER_02: Yeah, but my mother was a very bubbly woman, so it kind of runs in my jeans.

45:08 Michael Mackniak: I I see, I see where you get it from for sure. Yeah, I'll tell you, I think you would be a lot of fun to work with as a as a counselor and as a as a coach.

45:17 SPEAKER_02: So we have a good time. I mean, there's there's some some digging in we do. Yeah, well, you're happy. We're gonna dig up some roots. Yeah. We have the right soil. But we have a good time. We do.

45:29 Michael Mackniak: Yeah, that's great. Well, I really I I really thank you for for coming on and joining me. And welcome, you know, and giving me the giving me and and the listeners that perspective of somebody with your background. I think that's the important piece, is you know, you even with all your background, you still had to slog through it, right? You had a kind of hold it together for everybody and and and you did that. So thank you for uh what you did for your mom, thank you for your family, and thank you for the work that you do for everybody else out there right now.

46:02 SPEAKER_02: Yeah, we we all need someone, and there are times where I help women walk through the same processes because it's you know when you're in the midst of things, life looks a whole lot different. And and sometimes we're able to hold it together publicly, but privately, then we fall apart. And and that's okay. We need that time to release and to to be recharged and refreshed. And sometimes when we just have a Carmen Jenkins to go talk to is Yeah, sometimes people just need someone if they can really express themselves with no judgment.

46:37 Michael Mackniak: Right, right. Well, thanks again for being here, and we'll talk very soon.

46:42 SPEAKER_02: Same for you. Thank you for being there and doing what you do.

46:46 Michael Mackniak: It's a pleasure, but I really enjoy it.

Final Message To Caregivers

46:52 Michael Mackniak: You know, as we've said before, grief is a permanent guest once it moves in, especially when you're dealing with the long winding road of chronic illnesses. But acknowledging that loss isn't something that makes us weak, it makes us honest. It allows us to, I don't know, be better advocates, better caregivers, frankly, better human beings, I guess. We just don't get over it when we have this role reversal, we carry it with us every step of the way. So if you're listening to this from a parked car because it's the only place you can hear your own thoughts, I want you to hear this loud and clear.

47:31 Michael Mackniak: You are not a bad daughter, son, husband, wife, kid. If you are grieving a mom who is still alive and they're in front of you, you're a witness to a transformation that you and she never asked for. The system isn't always gonna see you, but we will. As I say, you don't overcome this role reversal. It's something you integrate. You carry the weight, you find the small winds that are buried in the wreckage, and stop apologizing for being human. With that, you can carry it with a little bit more grace and a lot less shame.

48:14 Michael Mackniak: It's heavy, it's messy, and if it's okay if you're only holding it together, kinda. I'm Michael Makniak, and I'll see you in the next one.