The Great Earwax Contraband Caper with Jolene Breinig

Why Home Caregiving Hits Hard

0:07 Michael Mackniak: Hello everyone, welcome back. I'm Michael McNak. This is the Holding It Together kinda podcast. We talk a lot on this show about systems, obviously, big messy gears of healthcare and advocacy and the disaster that it's become. Uh, today I want to zoom in a little bit. I want I want to go into the uh the intimate setting of our home, the four walls that make up our home, the people that make up our home. And for those of you who are caregivers, I've heard this mentioned many, many times, and I'm sure you've you've said it yourself, it's a labor of love.

0:44 Michael Mackniak: But that phrase can sometimes mask the sheer physical, emotional grit that uh the role requires, right? And I know you know what I'm talking about. So if you're a professional coming home into a new environment or a family member who's suddenly thrust into a life-altering responsibility, you know, the stakes are the same. You need to respect the dignity and the well-being of another human. That's huge. Don't take that lightly. So today we're gonna be um joined by a nurse per a professional nurse, RN, named um Jolene Breinig.

1:23 Michael Mackniak: Uh she lives right at the intersection of medical necessity and personal connection every single day. And we're gonna talk about that. And we're gonna pull back the curtains on the logistics of how she does it, what she does, uh, the realities of professional burnout. Yes, folks, even professionals get burned out. And you know how some of you guys out there can really keep your heads above water when the height of caregiving starts to pull you under, and you know, they they could be a lifeline for you.

1:52 Michael Mackniak: So it's something to consider.

Meet Jolene And Her Nursing Path

1:55 Michael Mackniak: Hey everybody, welcome back. I'm Michael McNak. I I want to really welcome uh somebody important to the show today. Uh, this is Jolene Brinig that is joining us, and she's gonna bring a really unique perspective to this because just this morning I was doing a podcast and I felt I felt like we were really beating up on uh people who are in the medical professions. And I always try to temper myself when that starts happening and say, you know, I know many, many, many people in the medical professions, and I know that they would not go to school and put all this time and effort and caring into what they're doing if they weren't nice people who cared about their jobs and what they do.

2:40 Michael Mackniak: And it it occurs to me that much like many of us are caught up in in the bad side of the systems, not for nothing, but so are the the caregivers and the care providers in these systems. And some of them are trapped in there, they feel trapped. You know, it's like my whole family's in education, and so many of them feel like they're they're they just gotta get out, but they're trapped in it, and for any number of reasons. But anyway, I want as usual, Jolene. Uh welcome, thank you for doing this. Thank you for meeting with me and bringing bringing aside that um or perspective that I think we really need to talk about.

3:20 Michael Mackniak: And I I want I always ask people, introduce yourself, tell us about yourself because I'm not gonna read a boring old script. And what gets you excited and what are you really juiced up about right now?

3:32 SPEAKER_00: Well, I I absolutely love what I do. I there are days it is very, very hard most days, but I love what I do. I and like you said, I think if people don't have a passion for what they do, especially in healthcare, that's where things fail. But I I started out in nursing homes, you know, worked my way up, started out as a CNA and all the things, and then went into a hospital setting for a number of years and and during the pandemic decided that okay, enough is enough. And I wanted to branch out on my own, and that's really how it started.

4:09 SPEAKER_00: And I I haven't looked back.

4:12 Michael Mackniak: Good for you, and you're passionate about that work now. Okay, so what kind of degree do you have? What kind of healthcare provider are you exactly?

4:19 SPEAKER_00: Oh, I'm sorry, I meant to mention that. Uh, I'm an RN.

4:22 Michael Mackniak: I yeah, I knew that, but I wanted you to say it.

4:25 SPEAKER_00: Yes, I went back to school it later in life. I was went back in my 30s and completed in my 40s.

4:32 Michael Mackniak: Nice, good for you. Congratulations with that. Yeah, yeah. And okay, so you were working in the nursing homes, you were working in various roles, and and you said, you know what, I I don't like the way this is being done, or I could do it better, or I want more freedom, or all of the above. All of the above start of my own gig.

4:52 SPEAKER_00: Kind of all of the above. And I especially because I I specialize in geriatrics, I do home health for the local community here, and it it really is, you know, a labor of love.

5:06 Michael Mackniak: Sure.

5:07 SPEAKER_00: But yeah, there's uh I think the disconnect was just seeing our elders not being treated well, not having a voice or someone to advocate for them. And I just really feel that not only in the medical field or in the geriatric field, but I think it's across the board. We all need somebody to advocate for us, especially in a broken health care system. So wow.

5:31 Michael Mackniak: So you what I saw when I was in practice, the practice of law early on, and created you know, Melissa's project, the guardian model, and now care coalition and all this other stuff. You saw the same thing and decided you were going to do something about it. I love that.

5:48 SPEAKER_00: Yeah, yeah.

5:48 Michael Mackniak: I just kindred spirits across the miles and across the systems, right?

5:53 SPEAKER_00: Yes. And it is so much more than just the you know the healthcare side, the physical ailments. It's so much of it is the mental health and you know, being there for our fellow men and women. I mean, we're all we're all just one tragedy away from being right there.

6:15 Michael Mackniak: So yeah, very true. So when you uh think of it, when you when you know you have your clients and and you you are working obviously as a professional caregiver, and that I want to focus on that. Okay, but uh but before we get that far, what is it and I know there could be any number of answers to this, but maybe you see some more than off more than others.

Why Families Choose Smaller Home Care

6:39 Michael Mackniak: What is it that that bring brings a family to say, hey, we want to bring in Jolene as opposed to us doing it or whatever the alternatives may be?

6:51 SPEAKER_00: Right. That's a good question. And I am a much smaller agency than some of the neighboring agencies. And I have several clients or family members that chose to go a more personal route with me. They had started out with some of the bigger agencies and again found that they were getting different, different caregivers, different nurses, different people that that continuum of care wasn't there and the consistency wasn't there. So I do find that people tend to, you know, when when they find me, they like the fact that they're getting consistent quality care.

7:30 SPEAKER_00: And, you know, I really started my business out originally on the nursing side, thinking that, you know, that's what was needed. But the more I got into it and very quickly I realized it's the caregiving side, the support side, you know, cleaning out the refrigerator for these people that physically can't, or you know, they've lost their sense of sight or smell and they're eating food that's gone bad. And, you know, I mean, things that you don't think about no, uh yeah, that that just made me so true.

8:04 SPEAKER_00: It's just you get into these homes and and you just don't know, you know, none of us have a crystal ball, and you don't know always what you're gonna get. But I I really I think people uh the wave of the future is really going to be home health, and I think it should be more than it, you know. Uh we're the first line of defense. We don't want to go to hospitals.

8:25 Michael Mackniak: No, I I I I think it's inevitable with the costs of everything and the insurance companies becoming more and more let's just say stringent. Right. I think I think it's going to it it's it's inevitable. And so kudos to you. You said uh a real a real key, one of my key seven components of a of a of a healthy service system is consistency. And I love the idea that you you're a one-person show.

8:55 SPEAKER_00: I have a couple younger critical thinking CNAs that that work for me. Um but I really do try to be the the one, and I and I don't send anybody in blind.

9:08 Michael Mackniak: Um no, well, that's I'm gonna get to that in a second. Yeah, but but but that's that's huge, and because again, getting back to my work with mental illness and let's say paranoid schizophrenia, right? And you're dealing with folks who have dementia, or particularly because you're working in the geriatric populations. What makes you know, talk about consistency? Can you imagine if you are a confused elder or if you are a paranoid a per a person with paranoid schizophrenia, and every day there's somebody new knocking on your door to bring you your meds?

9:42 SPEAKER_00: I mean I I yeah, or you turn around and a total stranger is in your home going through your cabinets.

9:50 Michael Mackniak: I mean yeah, yeah, yeah. And you forgot they were there because you have dementia or or Alzheimer's, and it's like and it's a yeah, there's no it's gotta be horrifying. It's gotta be horrifying. Yes, let me ask you this. You said that you know, some some folks that they decide that they're going to go from from a bigger agency to a smaller, more personal touch, which I love. I think that's fantastic.

Guilt Siblings And Letting Help In

10:16 SPEAKER_00: Thank you.

10:16 Michael Mackniak: And let me ask you this: do you think that these these folks struggle with the decision to bring other people in?

10:25 SPEAKER_00: Absolutely, absolutely. And it's not just the demographic that I work with, although I do feel that the generation that I'm working with, they are a very private group of people. They were raised in an era that you know that you don't share your problems.

10:43 Michael Mackniak: Yes, I I I've had that experience with my elder relatives who unfortunately just passed away not too long ago. But yes, they very reluctant, especially to a younger guy in the family, right?

10:54 SPEAKER_00: Right.

10:55 Michael Mackniak: Takes a while, you know. I've been practicing law for over 30 years and they still don't want to talk to me about the legal stuff. Exactly. But but but what about the the the kids of the and that's generally who I deal with?

11:08 SPEAKER_00: It's not the my clients or patients themselves. I you know, 90% of the time I'm dealing with the the children or you know, extended family. They're the ones that find me and hire me. And yeah, you know, and in fact, I I just just onboarded a new client that you know has four children. And the children were, you know, we've been in talks for months and months, and it's been going back and forth. And oh, well, you know, there's four of us. We should be able to handle this.

11:40 Michael Mackniak: We should, you know, that could be that could be one of the worst situations, but go ahead, I'll yeah, yeah.

11:44 SPEAKER_00: It's it's it's true because you know, people feel like they should be able to take care of their own parents or deal with it amongst, you know, especially if there's multiple siblings, which, you know, people need to get let go of the guilt, you know, I do this for a living. Whereas, you know, they they have full-time jobs, they have children, they have, you know, and and nobody really prepares you for taking care of your elderly parents.

12:10 Michael Mackniak: And that and that's exactly one of the big messages, if nothing else from tonight, right? You gotta get rid of that guilt. And yeah, you have to have a life, and your parents wouldn't want you, at least most parents, at least most parents wouldn't want you to be sacrificing your prime life for for them. I I I I honestly believe that, and I really think that people do, though I know that people really struggle with that guilt. Yeah, and another thing that you touched on is the sibling groups. I mean, I I have to tell you, I have seen God bless you if there's four or five of you and you think you could handle this this care, but how often do you see it turn into a resentment festival and who's not pulling their weight?

12:58 SPEAKER_00: And oh, uh every single day, every single time, yes. And and my husband is an only child, and he he always says, you know, there are perks to being an only child.

13:10 Michael Mackniak: Yeah, sure, sure.

13:11 SPEAKER_00: But but yes, and and it you do get to see the dynamics within the family, and you know, but I think it goes back to building trust, you know, and again, with uh my patients, my clients strictly dealing with me 99.9% of the time, and it's building that rapport, it doesn't happen overnight, but I think, you know, if you can really build a rapport and trust, I think that's the biggest thing. And I think that's what's lacking in hospitals in the sense or facilities, is that you don't have that, you know, you don't have the time, the one-on-one, you know, you're rushed, you have eight minutes per patient.

13:52 SPEAKER_00: You know, it's it's insane.

13:55 Michael Mackniak: And and that's I didn't even think about it from that perspective. We were just talking about that today, about how we but that that theme's come up quite a bit lately about how much time the nursing, the not the nursing, but the medical professionals have per patient, and how that is driven by by insurance and medical and not necessarily medical necessity as much as the dollar and the the yeah logistics of taking care of however many patients. But I think that what one thing that we could say, and just to wrap up this little this little discussion is I think that the consistency that you talked about is paramount and almost equal to trust.

14:31 Michael Mackniak: Without it, you can't have you can't have, I don't think you can have one or the other. They're they're biotic.

14:37 SPEAKER_00: Right, absolutely. I I agree a hundred percent.

What To Look For In Caregivers

14:41 Michael Mackniak: So you were talking about you have a couple of CNAs, and I love the fact that you you use the term out of box thinkers because I think that's one of the great things about one of the younger folks. I really think that they're good at thinking outside the box because they were trained their whole lives with multiple and different multiple stimulants coming at them from all over the place. But I really think that they're better at thinking outside the box than probably even our you and me and our generation, certainly our parents and our grandparents.

15:12 Michael Mackniak: Absolutely. What are some of the qualities that that you think that folks out there should be looking for when they're looking, you know, talking to a professional caregiver that they may want to bring into their home, other than the fact that they're not gonna steal and rob you blind and beat your beat your yeah. I mean, let's get me on the obvious, you know.

15:34 SPEAKER_00: Right. We would if it hadn't happened, we wouldn't even have to talk about it.

15:37 Michael Mackniak: But until no, no, I know. And that's a whole other story for a whole other day.

15:42 SPEAKER_00: Exactly. I could do uh probably 20 podcasts on that, but right, right, right. I think I'm sorry, and again, this is after a 13-hour day here. I'm trying to think back to the original.

15:54 Michael Mackniak: So the qualities that we're talking about with the people that you know, are we are we um I guess one of the questions is are we are people qualified? Are people coming out that are qualified, willing, and able to do the work?

16:06 SPEAKER_00: I don't, and I guess I don't want to be too negative on that topic, but you know, you and I when we had met talked about the warm body uh factor, like is it okay to just have anybody as long as somebody's there? And one thing that happened during the pandemic, which has kind of shifted, you know, globally, not just in the United States, but that they started a term called a PCA, a personal care assistant. It's basically a made-up term. You know, in the olden days, it used to be, you know, you started out as a CNA and then an LPN, RN, you know, and so on and so forth.

16:46 SPEAKER_00: And the PCA term really is just that. It's a person, it's any person. You don't have to have any medical training whatsoever. And and most facilities are going that route for the simple fact that it's cheaper, but in the long run, is it billable to is it billable to to Medicaid, Medicare, insurance? Basically, yes, they basically quantify that that is like a CNA. And a lot of times these facilities get through the loopholes by by claiming that they are CNAs in training. You know, that makes sense.

17:22 Michael Mackniak: Yeah, yeah, yeah. You bring them in as a PCA, but they're they're everybody's gonna have the certification by the time they work however many hours, and yeah.

17:29 SPEAKER_00: Right, right. And whether or not that ever comes to fruition is yeah. It's a question for mother dad. Right, right. So I I personally, and I know a lot of people tend to say, like, oh, you care too much. And I I find that laughable because I mean, is there such a thing as caring too much, really?

17:49 Michael Mackniak: Uh no, I was gonna ask you that.

17:51 SPEAKER_00: I don't think there is, and I know it's it's very hard. I mean, I I deal with people that I get close to that you know that I absolutely love, and you watch them decline. And and so I think one of the biggest qualities and I think characteristics is you have to be brave. You have to be an empath, I think, or at least I thought you were gonna go right to empath, and you went to brave.

18:14 Michael Mackniak: You know, no, that's really interesting to me because I talk about courage a lot when I'm talking to caregivers and and and finding that that voice inside you to be the advocate and to be the the proponent that your loved one needs you to be. So I'm really pleased to hear that. I mean, that really blew me away because I thought empath was going to come out of your mouth right away. No, no, it was great.

18:38 SPEAKER_00: Yeah, I um I really do because you you choose this vocation, this calling to help and to be that for people and and for the most defenseless people out there, the the the mentally ill, the physically ill, you know, most at need populations. Absolutely. And I think without bravery, because you you go into it knowing you're gonna it's gonna hurt your you know, it's gonna hurt your heart, it's gonna it's it's going to be draining. But I think again, it goes along with boundaries. You have to just really and you uh and I think most people know if you don't fill your cup, you can't help anyone else.

19:23 Michael Mackniak: Yeah, yeah. Absolutely, and I definitely want to talk about some of the some of those tools for caregivers in a in a minute here. So tell okay, so you've mentioned your 13-hour day here.

19:37 SPEAKER_00: Today, yeah.

19:38 Michael Mackniak: Today. The other day, you know, full disclosure, we were supposed to meet the other day, and Jolene had an emergency that came up and she had to cancel on me. I've you know, I've been kicked out by uh nicer places, and you know, but it's fine. We're here now, and I for you know, I forgive. No, so it's completely understandable, and I wouldn't want it any other way, you know.

A Day In The Life

19:58 Michael Mackniak: But tell us about what a day in the life of of a professional caregiver looks like.

20:06 SPEAKER_00: Well, you know, you you you kind of block out your day. I try to block out a week, some sometimes a couple weeks ahead, you know. I try to plan as much as I can, but given the nature of what I do for a living, that's not always feasible. And so I start my day out with my first patient client, whether it be a family member meeting or hands-on, the way it works for me is I, you know, if you hire me, you're hiring me for that chunk of time. And whatever you need in that time is what we do. I mean, if that's wound care, if that's, you know, you need me to help help you take your garbage out because you physically can't, you know, it can be the, you know, some days it's the nursing side.

20:53 SPEAKER_00: Like yesterday, you know, I was in the ER waiting with a patient for a couple of hours until their family members could get there. And so then, you know, I'm having to call my other families and, you know, and they understand going into this that it's a relationship. It's not, you know, you have to be human, you have to be flexible. You know, I I pride myself on being consistent. And I would, you know, and I I let the families know if if it if it's your mother, if it's your father, I will stay with them until, you know, until they don't need me in the moment, if it's crisis and and that goes along the board, you know, I'll I'll do that for everyone.

21:33 SPEAKER_00: So they tend not to get upset with me if I'm running a little behind because, you know.

21:38 Michael Mackniak: Yeah, yeah. Right.

21:39 SPEAKER_00: I got it. But but yeah, and and I go from home to home, you know, and and in the interim, I uh sometimes have time to take uh my notes and do my charting. Other days I I wait until I get home and and work on it afterwards. But, you know, and I try not to take on too many. patients in a day. I I really want the quality of care to be there. So what what is the saying? Under underpromise, over deliver?

22:10 Michael Mackniak: Something like yes. I think you nailed it. Yeah.

22:13 SPEAKER_00: I take on less than I used to in a day. I try to keep it to four or five patients a day.

22:20 Michael Mackniak: And then it's still quite a bit.

22:22 SPEAKER_00: And it's my yeah it can be very and and when I have my younger CNAs working, you know, the they're wonderful, like I said, very much critical thinkers and and they we we have very open communication. And so that's that's great throughout the day if I at any given point I'm I'm available. You know, and I I try really hard not to take too much of my business day home because it just rolls into the next day. So I I really I think I've gotten better about doing self-care when I get home and at the end of the day.

23:00 Michael Mackniak: Well that's huge. And like you said before your cup has to be you know your cup can't be empty. Right. So so today, I mean don't tell us names or anything specific but what are some of the what are some of the issues that you face today?

Dementia Care And Unexpected Moments

23:14 Michael Mackniak: Did you face somebody with dementia? Did you face somebody with diabetes you know what was the gamut that you ran today?

23:21 SPEAKER_00: Well I started my day with a woman that for for all intents and purposes is very able-bodied she has a heart condition. Her children are out of state and they you know they're a very close family and they had hired me to kind of keep an eye on her and and just some of the companionship. So I started my day today with a very very lighthearted easy fun you know it doesn't feel like work. It you know but we take her vitals we do you know the blood pressure get that out of the way and then and then we can just enjoy each other's company ask her what her needs are for the day and and go from there.

24:03 SPEAKER_00: And then I my second patient of the day is a gentleman that I just just met recently and did not know the level of his dementia it was much more advanced than the family had let on. But so that's that's another critical you know when you you you can't always know a hundred percent when when you're dealing with Alzheimer's and dementia it's it presents very differently for everyone and there are some commonalities but for the most part it's very different. And so it is learning to adapt and just kind of be able to do that on the fly I think is really important.

24:44 SPEAKER_00: And and but we had a great time you know he showed me his family photos he couldn't he couldn't name anyone in the photos his his own children's lost bits and pieces of memory from family yet long term memory seems more intact. That's that's pretty much the norm. The short term is what goes first but so we had about an hour and a half together and it was very interesting and and I I wasn't sure how he would respond when his wife came home but he had a big smile on his face and he said oh we had fun and good and so that was great that's I mean that's gotta be gratifying on so many levels.

25:23 SPEAKER_00: Very very and just to give her peace of mind his wife the peace of mind knowing that she could leave long enough to get her hair done and not be worried.

25:33 Michael Mackniak: You know and that goes back to some of the things that I think we talked about a few minutes ago is this this pervasive guilt that people feel if that they're not enough and they can't take care of their loved one and and as you said yeah that okay so bring in help don't be afraid to bring in help and ask for help.

25:50 SPEAKER_00: It's so important so important.

25:52 Michael Mackniak: And I know it's a very humbling thing to have to ask and it's also a very hard thing for people to allow other people into their homes you know you think about able-bodied people like you're gonna have a party or company and what's the first thing we do oh let me clean my house let me you know and these are people that may or may not have that ability but they're still making themselves vulnerable and allowing me into their home and I don't take that lightly no and nor should you I mean that is a that is a huge going back to that is a huge trust issue for especially elder elder folks you know and for anybody but it's certainly for that that generation it's a generational thing and it's an age thing you know very much so and and then and then I went into a facility a care facility where I have a client who is in memory care.

26:46 SPEAKER_00: So that was the next step is memory care. I'm allowed as her home health nurse to take her out and it's always an adventure whether or not she's gonna go back willingly or if it's going to be an issue.

27:03 Michael Mackniak: Really that's an interesting one that can be a tough one. That is a tough one that is very there goes that trust concept like she's trying to get to you to be the co-conspirator to let her run away oh yeah you got to be the the person no I'm not gonna help you run away and yes and and exactly that she's asked me not to take her back.

27:24 SPEAKER_00: She you know there's there's such a dynamic there. And we had built a really good rapport right before she went into memory care. But but yes it can turn on a dime and it did today she got very angry with me. You know in a memory care facility they are not allowed and rightfully so to have medications in their room whether it be over the counter medications you know this was just simply a box of earwax removal and she can't you know they can't keep that in their private that's considered medication it is it is anything over the yes anything like that is is contraband in a it's not heroin in needles it's earwax removal yes that's where you can see the humor in it and you know she was hiding them in boxes of Kleenex and trying to you know and I had to be the bad guy and say you know no you can't keep this in here and give it to the charge nurse and that caused a huge you know where you know she was trying to grab them out of my arms she was trying to slam doors and you know it it can be very challenging in the moment but again it's like step back take a deep breath you know and really in the in and memory issues and dementia Alzheimer's et cetera etc there is a I've seen a lot of it and you've not as much as you but I've seen a lot of it in in the work I've done for my my in my law career.

29:02 Michael Mackniak: Yeah there are patterns of it that are identifiable and one of them is this aggressive behavior and this nastiness that people go through but almost invariably I've seen where they come out of that too and become the sweet sweet person. Absolutely some of the most heartwarming things to see it is and yeah let me ask you this when when you were talking about oh no I wanted to make a comment about um my earwax smuggling ring that I have yes yes I'm your girl yeah right now the uh you you brought up that the fact that the family's living out of state yes and this goes back to what we were talking about earlier with and again you're frozen but it's okay for right not you wow you're sitting it's really weird hear me or is it just a matter of not being able to see me I can hear you but right now you got this wild screen thing going on.

Long Distance Care And Better Communication

30:00 SPEAKER_00: Yeah it's like pixelated yeah yeah yeah we'll we'll just work with it okay we'll just um we'll ignore that we can yeah just ignore just ignore the uh just ignore the elephant in the room just I do that a lot yeah just act like she's everything's normal okay so anyway what I was what I was gonna say is I think one of the big big things for families now and we were talking about this earlier the need for care providers such as yourself is the transient nature of our society and what we've become you know and in and the fact that these kids live out of state that's not abnormal no it's not it I'm actually finding that's more common and I and I think it also goes back to you know our society very much I think if you are disabled if you are elderly you are considered a disposable part of society unfortunately they really truly and I think you know in the olden days people it wasn't a question you you took care of your parents or you took care of or you know in other countries it's it's not a question they that your elders live with you and here I think and again you have to live your own life you have to fill your own bucket absolutely so you can coordinate care from out of state and I think that's also going to be kind of the wave of the future is that it is going to take more more of the telehealth type you know zoom meetings between children coordinating care consistency you know the care journals that I keep within within my clients' homes you know for anyone it's not just for me or the CNAs it's it's for everyone it's for the family you know the the person that delivers the meals on wheels or the groceries you know please write down you know I brought them this I took this I did this you know being very consistent with communication is is just huge.

32:09 Michael Mackniak: Well and the the checks in the mail Jolene because now you just gave me the perfect segue to talk about the Caregiver journal I know you saw the journal created and I really hope that encourage people to use that as a good way to do exactly what you're talking about right now.

Care Navigator Journal Break

32:27 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.

32:58 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.

33:33 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 for the lady who wanted to go get her hair done and and leave her husband home for an hour and a half she can leave you this journal or any kind of diary of the events and what's been going on in the home for you know or or with her husband for the last few days and talk about how important that is for you as a caregiver.

34:19 SPEAKER_00: Oh it's it's essential and I love the way your care journal tracks I mean I when when I saw it I was like oh my gosh this is exactly what I've been looking for rather than just a legal pad you know I mean not that the notebooks I've been using don't work but this I it's really it's it's it's a great a great tool and I suggest it to all my families now in fact the little pocket size one that you had I yeah I love that that is that's phenomenal well what we wanted to do was get the the things that looked exactly like the green binder and put the put fill that with sticky notes you know yeah yeah we didn't get it done in we didn't get it done in time but damn it well no like I said the checks in the mail I appreciate the the good words because I really believe in it I really and I've seen how much caregiving professionals psychiatrists on every level I mean the the commissioner of the department of mental health you know appreciates this this really good well kept narrative so that they're just not making decisions in a vacuum.

35:28 SPEAKER_00: That exactly and it and I I say all the time it takes a village it really does and and I have to try to ignore the the video that keeps going weird on me but yeah it's it's so much that it really does it takes everyone involved to to really have a good outcome to live to help these people live the best quality of life they can live and you know whatever that looks like for that individual family. And and I just think that you know the cons again it's the seven C's that you talk about the consistency and that and coordinating and and for me it's it's the the boundaries the trying not to burn myself out trying to teach the next generation how to fill their cup as well and not you know I was brought up on work work work you know the harder you work the better and it and that's not always true.

36:31 Michael Mackniak: No one of my dad's famous quotes when I was starting my law practice was if you're not working 80 hours you're not making any money.

36:38 SPEAKER_00: Oh gosh I need to sleep.

36:44 unknown: Yeah what are we doing?

36:46 Michael Mackniak: But so but but okay so we're talking about we're back to traits again and I think this is important an important discussion because it goes to families who are caregiving it goes to professionals who are caregiving and it goes to the young CNAs that you were talking about and passing the torch. Yeah I know that one of the traits that you have to have in addition to courage and empathy that I don't have this is why I could never do the work that you do so God bless you for it is patience. You have to have patience and I mean with the C E not a T S.

Compassion Fatigue And Burnout Signals

37:20 SPEAKER_00: Right yes lots of pay yeah the patience of a saint but but you also have to have strength to overcome your own excuse me compassion fatigue I think yeah and compassion fatigue it it it's a real thing.

37:36 Michael Mackniak: What does that look like and what have you experienced with it?

37:39 SPEAKER_00: I've gone the gamut I've had the burnout I I made the you know well and I shouldn't say mistake I was gonna say I made the mistake of taking on a client this was years ago where I actually physically moved in to help them through a temporary through a broken bone and also memory loss you know she was in her 90s and of her five children none of them were a viable option. So and I had I had developed such a rapport with this woman that I thought you know what I'm in a position where I can you know stay in her guest bedroom for and you know the baby monitor next to my ear and you know it just after five months it it was only supposed to be for a couple of months and there was supposed to be a lot more respite involved and that didn't happen.

38:30 SPEAKER_00: And after five months I you know I just said I have nothing left I have nothing left to give and I yeah and I so what is that what did that look like what did that look like what did it feel like to the people out there that maybe experiencing it what is it what is it well it feels terrible it it feels it's heartbreaking to to to realize that you are at that point but you but I you owe it to yourself and you owe it to to the other person to be honest and to speak up and I didn't speak up soon enough and I think I think that's the takeaway and that's what I learned is that you have to you have to speak up you have to you just have to humble yourself in so many ways in so many situations because you can have all the knowledge in the world but it you know if your brain's fried your brain's fried you know all the all the courage in the world and all the strength in the world if you can't summon it which you was the very first thing you said right that you need it to be was courageous and and I would add strong to that and if you can't be that then the whole shooting match is is gone.

39:43 SPEAKER_00: Right right and then you're not yeah you're not being any good to that person that you are right and in that moment right and then you're not only not being good for that person uh you know now now there's two people that need help you know right and I'm never gonna go back down this career path again. Right. And it it really is a wake up call when you allow yourself to get to that burnout point. And and so preventative I think is is key.

40:12 Michael Mackniak: I mean you have to realize that it is essential to but it's also okay to say that you're in that place and it's okay to say I I've had enough I need to walk away and you know please help me because you know especially with Alzheimer's and dementia it it it's you know short spurts I think you know more people that can be involved and I know that's not always feasible for everyone you know it's and that's where the system can be broken as far as finding the help that you need and I know absolutely paying for the finding the help finding the qualified help finding the willing help right and then paying for that help and it's just it really is a problem within within the way we've structured our our healthcare system and you know one of the problems that goes right along hand in hand with that is the age of our population right now.

The Real Cost Of Long Term Care

41:04 SPEAKER_00: Exactly there's nothing we can do about that they they brought us into this world so right and right and that's where I feel like nursing homes memory care assisted living skilled nursing facilities you know RBFs all of that it's I don't know as though it's going to be sustainable. I I you know whether or not the just the sheer amount of facilities is not there the amount of workers needed you know the cost I have clients that literally pay$10,000 a month to live in a very nice nursing home and yet well below the national average by the way yeah and$10,000 well below the national average.

41:42 Michael Mackniak: I last I knew the national average was what's over$13 and I think it's over 15 or 16 now.

41:47 SPEAKER_00: It it is which is just astronomical and and we're and then and in the Midwest we're probably some of the the more affordable right um but yeah$10,000 a month and and then yet you know her family still pays me to go and you know because it the level of care and again it's you know it shouldn't be that way.

42:09 Michael Mackniak: And you know I've as an aside along these lines I've seen both sides of this long-term care insurance. Yes have you have you seen it I I've seen I've seen where people were getting ripped off badly in the 70s like the companies were taking money and then just went out of business oh well still see you later by however two of my relatives my aunt and uncle they had it and it was wonderful for them in their in their waning days they they didn't reach in their pockets for anything. That's and that's wonderful that is fantastic and I I'm not gonna I'm not going to recommend that people get it or don't get it.

42:49 SPEAKER_00: I think it's worth looking into it it is worth looking into but you have to do the research because the I normally am a private pay and and this is where again whenever I do not set a solid boundary or I should for someone which I did for an elderly neighbor I agreed to take their long-term care insurance as payment. And let me just say I started working with this family January 5th it is now April 30th and I have yet to get paid by the TC. I get a lot of pay I mean I faxed 27 pages of documentation to them just yesterday as a matter of fact.

43:33 SPEAKER_00: Yeah and we're actually at the point of hiring an attorney such as yourself. Yeah it's it's really you know but but the ones but I also know people that their long term care insurance has been wonderful.

43:46 Michael Mackniak: So it no I I once a friend of mine's dad had it and this guy had a lot of money and I think he just got scammed the company didn't exist and well they they existed but then they went out of business and and he wound up putting all this money into Long-term care insurance. And I think that was a thing that was popular in the 70s and early 80s. And a lot of people, you know, however many decades later wound up getting screwed. I think that the insurance company, the insurance agency and industry has really changed, and there's more checks and balances.

44:18 Michael Mackniak: So I will say that to them. And I would say that you got a heck of a lot better chance of finding somebody honest and having a good system now than that.

44:27 SPEAKER_00: Yeah. And I agree. And I think, you know, I think it was just a matter of, you know, they got involved with a company that's been bought out multiple times from different entities. So the changing of the guard has been an issue. And, you know, and and their rates have increased five percent a year for the last 26 years. So that, you know, you gotta look at companies that, you know, just do your do your due diligence.

44:53 Michael Mackniak: One thing that you said is that you think that there's a lack of nerd of nursing facilities, nurse extended care facilities. And that kind of surprises me because it feels like they're they're they're popping up everywhere out in the northeast. I just I don't you but and go back to that. If there is this shortage that you're referencing, well, no wonder the cost is so damn high. I mean, you know, it's a simple supply and demand. I never even took an economics class and I could tell you that.

45:22 SPEAKER_00: Exactly. Yeah, exactly. And and there are some big beautiful facilities that have gone up in some areas. Yeah, yeah, absolutely. You know, they have the hair salon inside of them, they have all they even have a bar in them in a movie theater, and yeah, oh yeah. I love that.

45:39 Michael Mackniak: Time me up, yeah. But getting back to the compassion fatigue, you know, I talked about patients, and I I use this term a lot because I think it's a one of the most powerful anti-emotions that we have. And I wonder if you felt this when you were experiencing this real burnout compassion fatigue that you were going through. Did you feel that sense of resentment toward the family and the and the client themselves?

46:03 SPEAKER_00: Not towards the client, you know. I think we're human. We we try to say, like, you know, keeping it professional. And I, you know, I understand that they have, you know, their life, but it but in that moment when you're having that compassion fatigue, when you're having that burnout, you absolutely your mind naturally goes towards like, well, where is their family? Why aren't they here? You know, you you can start, and and that's one of the cues. When you start asking yourself, like, when you notice that you're getting resentful or irritable over absolutely.

46:40 SPEAKER_00: Those are the some of those red flag signs in the beginning when you're like, okay, wait a minute, I need to step back. And and yeah, absolutely. The resentment, and even in your own home and even with my own dynamics of my family, you know, sometimes it's like, I think, well, you know, why isn't my brother doing more? Why isn't my sister? You know, like I but that's just human nature. And I think as long as you don't sit and ruminate on it, you know.

47:06 Michael Mackniak: Well, and and that could be hard. And that's that's the whole that's part of the symptoms, I would assume. And I don't know, I've never looked up a definition of compassion fatigue. It's kind of like you know it when you see it, or you know it when you're feeling it, or or or I guess to your point, maybe you don't even know you you're just in it and you're just dragging through the day.

47:25 SPEAKER_00: And there are there are days like that, and I think, and I think that's with any or most career choices. I mean, when you're dealing with human beings, it's it's obviously different than you know, data entry or something like that. But and no offense to my friends that are data entry, but I think you I think the stakes are just so much higher, you know. You're dealing with a human life, and so I think you tend to get give more of the grit, like you, you refuse to give up, you refuse to give in, and you're like, I'm just gonna push through, but that that really doesn't serve it doesn't really serve you, and I and it doesn't serve them.

48:06 SPEAKER_00: And I I learned that the hard way.

48:09 Michael Mackniak: How does it look when you have say family members or you know, any kind of caregiver, family member caregiver, professional caregiver? And you know, God forbid you you have a kid that gets in a car accident, and now you know, this perfectly healthy kid that was 25 years old is now completely dependent on you, or or you know, your elderly mom or dad gets uh early onset dementia, and you're talking decades and decades. And I mean, how could that not be tiring, exhausting, just taxing?

48:48 SPEAKER_00: Yeah, mentally, physically, emotionally, it it just is. And I don't think there is a way of saying that it, you know, how do you make it not?

Coping Tools And The Word Help

48:57 SPEAKER_00: I think it's a matter of how how well your coping mechanisms, how well your support system that you have in place, because I'm I mean, for myself personally, and I can only speak, you know, what I use, you know, I use insight timer, you know, meditations, they're free. I do binaural beats at night to decompress, you know, breathe breath work, anything that helps regulate your nervous system and to reset and reboot. And sometimes you have to do it 20 times a day.

49:33 Michael Mackniak: Yeah, right, right. I'd be I'd be off what do they call that, like dizzy because I'm trying to breathe too much, you know.

49:40 SPEAKER_00: Hyperventilating?

49:41 Michael Mackniak: Hyperventilating, yeah. I'd be hyperventilating.

49:43 SPEAKER_00: Well, that's where the oxygen mask comes into play.

49:46 Michael Mackniak: Yes, but but but I mean and these are these are lessons that not for not for nothing, but a lot of people say these things. Do a little meditation, go out and breathe, go outside walk, you get the birds and stuff and walk. And it's like all the people that are saying this to me in various forums and different formats, yeah, it can't be wrong with all these people saying the same damn thing. So why don't why do you think we just don't do it?

50:19 SPEAKER_00: I think we're hardwired as humans to push through it to say I can gut this out? Uh yeah, and I think we're also, you know, like one of the hardest things I think one of the hardest things to do as a human is to ask for help. And I don't know why that is.

50:35 Michael Mackniak: I I really I just talked about this two days ago because if if it's so hard for us to ask for help on the one hand, and yet on the other hand, every single one of us wants to help somebody else. Yeah, how crazy is that?

50:52 SPEAKER_00: It is, it's it's that duality, it's it's insanity.

50:55 Michael Mackniak: And uh I would rather suffer and and and kill myself than try then ask you then ask you for help while you're sitting there saying, I really don't want you to suffer or to beat yourself up and kill yourself. In you know, obviously we're talking euphemistically, but right you want to help me, but I and I won't ask for it, but meanwhile, I want to help my mother, father, brother, sister, whatever. Sure, sure.

51:19 SPEAKER_00: And it it goes along. I I mean, we're talking 20 years ago. There was a gentleman I knew that uh led a addiction clinic, and one of the exercises that he had done for his patients was he set up like a almost like a clothesline maze outside. And and his segue was okay, you know, I'm gonna blindfold all of you. This is um, you know, this is a trust thing, but you know, you blindfold the patients, you walk them out to this maze that they're uh holding on to. And and he tells you, you have one word, just one word, and I'll take the blindfold off, and you know, to get you out of this maze.

52:03 SPEAKER_00: And and the rope was literally in like a loop, so there was no way out of it.

52:08 Michael Mackniak: The only way that's just dirty pool right there.

52:11 SPEAKER_00: But the one you had to come up with the one word, and the one word was help.

52:15 Michael Mackniak: Help. I yeah, I figured this would be a good one.

52:17 SPEAKER_00: That's brilliant, you know, and people would just try and try, and hours would go by. It's like yeah, yeah, yeah.

52:25 Michael Mackniak: And he's just sitting there to get in a suntan, yeah.

52:30 Michael Mackniak: Listen, I I really appreciate this this vibrant conversation because as I said, I I point out the problems in systems, it's what I do, it's it's why I built it's what I built a career around. But I I know that the that the people in the system aren't the problem, it's the way that the system is designed and what it's become. And and there are caregivers out there who need to know that there are loving, fun, funny people like yourself who are doing this too, and they're willing to help. And you're gonna ask for it, damn it.

53:06 SPEAKER_00: You do, you do, and that's just it. I, you know, like I say, I don't have a crystal ball. I, you know, so they I try to make myself as accessible, and I hope other people like myself, like-minded people are out there doing the same thing like yourself. And I love the holding it together kind of, because I think we're all in that boat, and I think we judge ourselves so harshly.

53:28 Michael Mackniak: You're just barely holding it together. A lot of us are bare, and that's okay too. Yeah, you know, and I I say just keep holding it together, even if it's only kind of exactly, you know, we're all just walking each other home, right? Oh my god, that's a great week. And with that, folks, that's a mic drop right there. We're all just walking each other home. Thank you, Jolene, for being here. Thank you so much for the conversation and and thank you for everything you do for so many other people.

53:56 SPEAKER_00: Thank you. I appreciate you.

Final Takeaways And Boundaries

54:02 Michael Mackniak: As we wrap up today, I'm I'm really struck by one major slap in the face reality. Caregiving is not a solo sport. If you're doing it alone, you're likely doing it in a way that's unsustainable. Jolene reminded us today that professional nurses have a whole suite of training, they manage their stress, they they have a way to go through the various responsibilities and tasks that um some of us are just completely ill-prepared for. I'm raising my hand right now. And even they face burnout, as she said.

54:43 Michael Mackniak: Uh sometimes it just happens. It's in very it's inevitable. If you're a family member at home and you're feeling overwhelmed, give yourself the grace to acknowledge it. It is hard. Not because you're failing, but because the it's inherently hard, difficult work. It's heavy stuff, man. The goal isn't just to survive the caregiver. Sorry, the care, the goal is not just to survive this caregiving journey. It's preserving a relationship that's there at the center of it. Take the break, set the boundary.

55:21 Michael Mackniak: Remember that you can't pour from an empty cup. She said it, the last guest said it, every guest has said it. I've said it a million times, even though I'm so sick of that cliche, but it's so friggin' true. Until the next time, keep holding it together, even if it's only kinda.