The Thin Line Between Care And Control

Welcome And Why Cases Matter

1:17 Michael: Hello and welcome to the Holding It Together Kinda podcast. I'm your host, Michael Makniak. Here we will get real in 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 talk 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.

1:57 Michael: 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. The clinical manual says one thing, but very often the human experience uh tells us a completely different story. I mean, every day we watch clients navigate choices that we feel like they fly in the faces of our professional training or our personal feelings. Choices that look like, you know, quote unquote mistakes from the outside looking in. Um, but to them, to our clients, to our family members, they feel like agency and and individuality.

2:46 Michael: Today, we want to look at this. We want to look at the raw reality of a bunch of different case studies. Um we have six of them. I hope I don't know if we'll get to them all, but uh if not, we can do it. You know, we'll just continue the discussion to another episode. These guys aren't just files that are being managed, quote unquote. Managed. They're proof that the line between protection and control uh very often is dangerously thin. We're we're gonna pull apart why policies often fail, and they're failing to bridge gaps, why they're doing that.

3:25 Michael: When when all other options have been exhausted, sometimes sometimes unfortunately we gotta bring it back to the courts and and have an honest resolution to some real deep-seated conflicts of personality, of opinion, of uh credo, of I don't want to say morality, but ethics and and philosophical beliefs. So let's get into it.

3:55 Michael: I'm happy to be back with my expert panel who we have not seen each other in quite a while. Hello, Sarah and Angela. Um, so we have the three legs of the three-legged stool here today, and we've all dressed as if we're in uniform for some reason. Isn't that weird? And Sarah made sure we all knew that she did her hair to get hey. So if you're gonna make any comments, comment about how great her hair looks. Yeah, folks, we want to talk to you guys about cases, uh, and we we've touched on this before with addiction, I know, and kind of uh quality of life issues.

4:33 Michael: This is gonna go a little bit deeper. I I don't necessarily want to get into medical back and forth. This is more about sort of everyday weird cases and things that come up in the in the life of acting as a fiduciary or as a as a loved one, and in the life of being a person who's struggling to maintain meaningful life in a community because that's what it's all about. We all want to maintain a life in a community that means something to us. So, why shouldn't those with mental illness or prolonged illnesses, traumatic brain injuries, et cetera, et cetera, why shouldn't they be afforded that luxury too?

5:13 Michael: So let's start out with this.

Pregnancy Consent Meets Personal Belief

5:14 Michael: Let's start out with this. We're gonna talk first about the collision between a client's bodily autonomy, we'll call it, and a fiduciary's personal or religious moral framework. I'm gonna first go to to Angela because this is this one's, you know, this one's it's not a beach ball, but the the case is obviously something that we can all relate to uh very readily. Tell us tell us about your client that we are calling for the purposes of this episode, Susan, Angela, and and what what was that story and why did this wind up being a conflict?

5:52 SPEAKER_01: Yeah, so Susan, you know, had severe and persistent mental illness. She also struggled with some substance abuse. And unfortunately, she ended up getting pregnant. And it was her call to the team to say that she did not want to keep this pregnancy and that she wanted to have the right to be able to terminate her pregnancy. And, you know, because she was conserved, all the doctors wanted to have the conservator to give consent for her to do that procedure for her. And the conservator at the time that was working with her had some religious views that were against terminating pregnancies.

6:34 SPEAKER_01: And so he did not and would not sign the consent. And so it got thrown back into the probate court to help make the decision on who really had the right to consent to terminate this pregnancy. And it was a really interesting situation because you could kind of see both sides, but you know, you're trying to act in the best interest of a client as a conservator, but you have your own moral views and how they were struggling with it, but also how the team was struggling to be able to help the client and provide her the support she needed to, you know, do what she thought was right with her own body.

7:12 SPEAKER_01: So it was definitely a very interesting scenario that the court did have to get involved with to make the decision.

7:19 Michael: What a, I mean, what a what a what a knock it out of the park first scenario, seriously, because it brings up so many touchy subjects that I I don't want to get into the politics or the you know the splitting the the the the listenership in half by taking a stance one way or the other, but boy, this is one that really you couldn't ask for a more stark, perfect example of what we're talking about than this, right? Uh my goodness, Sarah, did you weigh in on this with Angela when you guys were in your supervisions and and and the languages that you had to use and stuff?

7:58 SPEAKER_00: Yeah, I think you know, I it to me it really wasn't a whole big ethical dilemma, though. I mean, and we had the same scenario happen with a couple of our uh folks that are conserved regarding the COVID vaccine. I feel like you know the folks, guardians, conservators, they're human, right? They have their own beliefs. But when there's a conflict, I feel like this one was, you know, ripe to go back to probate court to go in front of the judge. The thing though that bothered me about this particular case is here's a client who's already going through a traumatic experience, right?

8:37 SPEAKER_00: And there's a whole lot of feelings around, I'm sure, the termination, right? And now she's got to go before a judge. And it's it and so that part felt a little icky to me. It feels icky, it does icky.

8:51 Michael: Right, right, embarrassing, personal, right? Yeah, yeah. And and here's the thing that I'm thinking well, naturally we have our we have a conservator who who's in place, and you know, very often we have to have a conservator in place, or a guardian, depending on where you're living, you're living geographically, of course. And these decisions are that are being made by a fiduciary are most often brought into play in to give authority in non-elective procedures. This is an elective procedure. I so I'm gonna talk about it from the legal perspective right now.

9:37 Michael: Okay, you know, you guys could talk about it from the humanistic side, and then I'm right there with you, I think. And maybe I am, maybe I'm not. But from the legal side, most of the most of the decisions that we ask a conservator or a guardian to get involved in is to give authority for more or less things that are emergent or non-elective type type of of issues. This is not that. Okay. Again, we are in a progressive state as far as this is concerned. I so we have to acknowledge that first right off the bat.

10:08 Michael: And therefore, what I would say first and foremost on this from a legal perspective is that in in this case, Susan, our our client who wants to terminate this pregnancy, has absolute right to make a decision for what happens to herself as long as it's legal. And in this case, it it was something that was legal at the time. And as long as a doctor does his due diligence and interviews her and finds her to be of capacity, making an informed decision, etc., the doctor should say, okay, she wants to do this.

10:48 Michael: But let's flip that coin too, because now you're the doctor, and the doctor knows that that Susan is conserved. How, and you know, he's also he also knows how much he's paying for his malpractice insurance. I can see where the doctor is also freaked out about doing this and wanting to get the blessing.

11:08 SPEAKER_00: I mean, that was a change. That was a did want to get the courts or did want to get the conservative court's blessing, right, Angela?

11:15 SPEAKER_01: Yes, and and and just to throw another spin on it, I mean, this this this situation that we're discussing now happened about you know 15 years ago. We just had a more recent situation this this year with the same scenario, not that the the conservator had any issues with consenting, but the doctor was getting involved in saying she's conserved and you know, you conservator need to give authority. And that particular conservator actually went into the statutes and said and took a whole nother spin about the fact that she wasn't making a decision right regarding to the fetus.

11:49 SPEAKER_01: Like she was only a conservator for the person, not the actual fetus. And so the judge, you know, in that case said, you know, the client had the authority to make that decision and gave her the consent to decide what to do. So that was also another, you know, additional scenario of this whole complex, you know, thing around your right, your body as a woman, a child. Oh, sure. That's what I'm thinking about.

12:17 Michael: I mean, you're opening up the entire Roe v. Wade argument right there about are we making a decision for the fetus or for the person or for the life or for the and that's not where we want to go in this podcast. No, by any chance.

12:29 SPEAKER_01: It's interesting where the court, though, has to get involved with regards to the who has the right to make the decision, right? Whether they're having their own religious things and they don't agree with it, or whether or not the client has the capacity to do it, and who at the end of the day really gets to make that decision when you have a person that's a conserved individual and makes it very, very challenging.

12:52 Michael: And the it the nice answer that we do have to fall back on as far as supposedly as far as our laws in Connecticut are concerned, and again, guys, it's a progressive state, these laws are do not apply in most of the most of the states. So take this with a grain of salt. In in our state, if a judge has not given you express authority to make a decision or to act in a certain way, you do not have, as a conservative or fiduciary, you don't have that ability. So I would argue right off the bat that this is something that was not expressly granted, therefore it stays with with Susan's decision-making capacity.

13:33 Michael: However, that having been said, I know that most courts, not only in Connecticut but across the country, are also still giving more or less blanket authority until questioned otherwise. So the answer is really not there. And it's again, there is no real good answer for this one. And depending on where you are, the culture of where you are, it could be a real, I mean, you know, not to get political, but look at the way that what Texas is doing right now to more or less outlaw and criminalize early termination of pregnancies in different ways, it really, and you know, these judges, their hands can be tied with it too.

14:12 Michael: So again, we really got to think about it for more.

14:15 SPEAKER_00: I just want to add one more thing. And in the cases that we're gonna discuss today, whether it's something like this, like termination of pre terminating a pregnancy, or life and death stuff that we're gonna talk about in a little bit, time is of the essence. And so some states there is time restrictions. And so by the time you get a hearing and by the time the procedure gets scheduled, I mean, there are certain time constraints that people are up against.

14:41 Michael: And so it's just that's an excellent point, too. Yeah. Well, and that's what I mean.

Psychosis, Cancer, And Capacity To Refuse

14:46 Michael: Think about okay. So actually, Sarah, since you since you led us right into it, let's talk about a case that's been on your brain a lot, especially in the last year. We're calling her Elena for purposes of this this podcast. And I'm basically a subject that's near and dear to my heart because of family. Tell us about Elena and and what's going on with her.

15:09 SPEAKER_00: Yeah, so Elena's case got dropped into our lab. So I got a call, I think, on a Thursday, from the local mental health authority, the clinical director, about a family that had been desperate in calling the local mental health authority for service. She wasn't even connected to anybody. So the family member was calling because their niece had pretty significant, they thought, breast cancer, to the point that there was an open wound and it was looking infected. And this particular person, Elena, was going into the woods every day, you know, just leaving very early in the morning, coming back very late in the evening.

15:53 SPEAKER_00: So whereabouts unknown, um, psychotic. So just really experiencing a lot of the symptoms of untreated schizophrenia, where she was paranoid and delusional and just not in a good place, you know, not really tending to her hygiene. It just there was just that she was just not in a good place.

16:12 Michael: Well, I mean, take it a step further, I'll say, because I know you don't want to, but it was melodorous.

16:17 SPEAKER_00: Yeah, yeah.

16:18 Michael: It was it was taking care of it.

16:20 SPEAKER_00: Yeah.

16:20 Michael: Yeah, it was bad.

16:21 SPEAKER_00: It was bad. So we got involved, and it took us a good solid two to three weeks to engage this individual, Elena. And it that was extremely difficult to do, but we were able to coordinate the team and get her into the hospital, which that was actually a really tough thing to do, believe it or not. We had to really work with the mobile crisis teams and the local law enforcement and the local mental health authority to really make a case for grave disability. But once we got her into the hospital, this is where it got interesting.

16:56 SPEAKER_00: So they did confirm that she had breast cancer and it was progressed, it was significant. She was refusing treatment, refusing all treatment, refusing even to have them do a scan just to stage it. And so the discussion became can she make that decision? Because the conservator, of course, wanted at least the diagnostic testing done and and figuring, you know, figuring out what the course of treatment options were. Could she refuse that and then just be discharged back out to the street to just die, you know, with her with her rights on?

17:37 SPEAKER_00: Or did the community, the hospital, the conservator, the probate court, did the community have an obligation to try to treat her psychiatric illness to see if she could actually make better decisions.

17:54 Michael: You know what bothers me about that right off the bat? That they're automatically assuming that she wasn't making a good decision. Think about it, because they're saying, well, you're obviously making a wrong decision, so we need to treat you psychiatrically in order for you to make the quote unquote right decision.

18:09 SPEAKER_00: Well, I think the and this is where it just becomes an ethical dilemma, because I had feelings around it too, right? So did the conservator, so do the doctors. The initial issue was that she was refusing the diagnostic testing, which were completely in in non-invasive. So she wasn't even and it was due to the symptoms of her psychosis. She was paranoid delusional. And so that was the first step of trying to figure out do we treat the psychiatric illness and see if she is developed some more insight, and then we can assess whether or not she wants the diagnostic testing.

18:50 SPEAKER_00: It was tough because we're we were dealing with somebody who was clearly floridly psychotic, and we were trying to reason with that person in terms of you know, medical treatment for themselves. That was life or death.

19:03 Michael: Right. And yeah, and quality of life, meaning the advanced nature of the illness.

19:11 SPEAKER_00: Yeah, the infection was gonna be over.

19:13 Michael: It was weeping, it was yeah. I mean, it was, folks, it was it's a pretty gross, disgusting presentation, to be honest, from you know, talking about it. Sorry to put it that way, but and and this goes back to that question of capacity. What what capacity does she have to make an informed decision about her well-being, etc.? And you had several people in this particular case saying she's she's not even making an informed decision about you know what day it is, never mind. And I remember, do you remember we got in a in a discussion one time with with with our friends over at the Legal Rights Project, where I was saying that I respect this guy's right to make a decision, but not when he's making it because based on the manifestation of an illness, right?

20:10 Michael: The guy's floridly psychotic, like like like Elena here. And the manifestation of that illness is such that she's not capable of making an informed decision. She's just, and it's not her fault, it's the illness's fault. Right, right. So, yes, when a person is floridly psychotic or in the grips of this kind of decompensation, arguably, they cannot make informed decisions, and therefore we can't listen, and we should not listen to those decisions. Now, she could say she wants X, she wants, she wants to say, I don't want the diagnosis.

20:47 Michael: And we could go through all the checks and balances and go through all the different different layers of inquiry. And it could come back that she's okay, she we agree with her then. You know, that's fine.

20:59 SPEAKER_00: Well, that's that is what I think the conservator and our goal was. Let's see if she can actively participate in this decision. Let's see if we can get the symptoms under control so that she can have some insight. And initially the hospital was pushing back and really poo-pooing that, but we made a really good case and we were like a bee in a bonnet, and it got kicked all the way up. Is that the right term?

21:27 Michael: That's another Sarah's.

21:28 SPEAKER_00: I think it is the right term, a bee in a bonnet, because I we were very nudgy. We were very, we were very nudgy.

21:34 Michael: Be in a bonnet is something good.

21:37 SPEAKER_00: Okay, well, we were definitely nidgy to the point that we got the president of the hospital involved and and coordinated all sorts of meetings, and it was determined that they were going to treat her involuntarily for her psych condition. And that did lead to, I mean, I can talk about the outcome if you want, but yeah, sure. I mean so what happened on this case is she was involuntarily treated for her psychosis. After that, she did agree to the diagnostic testing. And we were able to stage the cancer.

22:15 Michael: They were so in this case, they've got her to a baseline where she was was able to make informed decisions about it.

22:21 SPEAKER_00: And well, yeah, so she was able to agree to the diagnostic testing. They were able to stage the cancer, and then the treatment options were discussed, and I believe she was able to more actively participate in that. Ultimately, she didn't end up getting the treatment. Ultimately, she ended up a diff with on a different course, which was wound care, which would not have happened had she not been treated involuntarily for the psychiatric condition. And she ended up going to a skilled nursing facility where they could manage her medical condition and also give her the dignity to choose the course that she wanted in terms of her end of the life, end of life, you know, uh decision making.

23:07 SPEAKER_00: So it was not a like happy ending, right? But it was the best we could do with it's her dignity, it's her life, it's her choice.

23:19 Michael: I mean, Angela, we see that a lot with like criminal cases, you know, over at when people go from the criminal courts, they get put into forensic psychiatry where they have to undergo these evaluations just to determine whether or not they can even participate in their own defense is one thing. But in this case, it's it's the decision-making process. But Angela, tell us in terms of sort of shifting gears here.

Predatory Friends And Housing At Risk

23:45 Michael: And and this story reminded me of a story that we talked about on another podcast that we did together, where I mentioned the woman who had the gangrenous leg. If you guys remember that, where she refused to have it cut off and it was going to kill her, blah, blah, blah. But so check out that podcast. I believe that's our our right to make a choice or choices, something about choice is the title. I don't remember what it is exactly. But I want to talk also about again, medical decisions are always going to be tough ones.

24:15 Michael: But there's another layer of tough ones that we've had, and I've had this, you know, in my in my professional experience as well. And Angela, I know you dealt with a case of Teresa recalling for purposes of this episode. Why don't you tell us about the situation that Teresa found herself in? Because we've had a couple of these cases along the way, thinking about a guy by the name of Kenny who was involved with one of our clients for a long time and we couldn't get rid of him. And uh I see you remember that case fondly.

24:44 Michael: Uh, tell us tell us about Teresa and her case and what what why you wanted to talk about that particular situation here.

24:53 SPEAKER_01: Yeah, so Teresa's case was really something I'd never seen out of 20 something years that I've been doing this. So Teresa had a mental health waiver. So she had certain services coming into her home to assist her with ADLs, grocery shopping, case management type tasks, getting her to appointments and stuff. She also had was on dialysis at the time. So she had a lot of interaction with these, you know, caregivers inside her home. And they would be in her home for, you know, four hours, you know, Monday through Friday.

25:24 SPEAKER_01: You know, and you get connected to your clients, right? When you've been working with them for that that long of a period of time. Well, this particular person, this caregiver had left the agency and had moved away, and you know, she had gotten a new caregiver, you know, and a year goes on, and you know, we're all just you know, maintaining her care and going on with life, and things are good. And then all of a sudden, Teresa calls up and says that this person is in the apartment. And we're like, Who are you talking about?

25:55 SPEAKER_01: And she's like, and she said the name, and we're all of us were like, Who is this person? And then we realized it was an old caretaker who had pretty much come back into her life and was using her apartment, pretty much squatting there with another man and a dog. And the dog was a big dog, and the dog was having problems inside the apartment. And so, you know, the but the fact that she had the right to have this now friend she was calling, which was not a friend. This was a caretaker from the past that is now obviously taking advantage of her and her situation, and we couldn't get them out of the apartment, and it was a really good struggle because Teresa wanted them to be right.

26:40 SPEAKER_01: They were now her friends and they were, you know, helping her, and she considered them as positive people in her life that you know that she cared about, and she thought that they cared about her, and she couldn't see that they were really taking advantage of her.

26:55 SPEAKER_00: And so, what were they doing to take advantage of her, though?

26:57 SPEAKER_01: Were they, I mean, they were squatting in the apartment, they were, you know, causing problems and noise complaints, the the building manager was calling, saying that there were people in the apartment that weren't supposed to be there, that weren't on the lease. And and we're not sure what else they might have they might have taken advantage of her because of financial, you know, they were eating her food. It was just all very meshed situation, but she wanted them to be there. And we had a really, really hard time of getting them out of her apartment because she was not agreeing to it.

27:33 SPEAKER_01: And then the only other option would have been for her to have an eviction, which none of us wanted to have her be evicted because that would have affected her life. And so the whole team was scrambling on how we were going to get the situation resolved. Like, you know, we sent her to respite for two weeks, hoping that they would see that she was gone. And she agreed to it eventually because I think she realized that her housing was in jeopardy, but then they just kept coming back. And eventually we did end up having to move this particular client from the apartment and helping her set these boundaries to not let this person in.

28:06 SPEAKER_01: And then, you know, the companion agency that had hired this person in the past then had to go in there and report this person because that was a clear violation and abuse of, you know, their their position then terms of taking advantage of a, you know, an individual who had severe and persistent mental illness. So yeah, it was a very interesting situation, but it really left us as a team struggling on how to really help her because she had the right to have who she wants to be in life in her life.

28:36 SPEAKER_01: And that is a really challenging thing when you know that these people are taking advantage and and not being helpful and putting her at risk. Like she could have gotten evicted, which would have been really a serious situation for her because she wouldn't have been able to get affordable housing for seven years because this person was her friend. It was, yeah, it was a tough case for sure.

28:56 Michael: So many levels, that's so difficult, especially when you take it from the very first thing that jumped into my head is what about the licensure of this person who is the former, the former treater now breaking those ethical boundaries and moving her and her family into this woman's house, knowing full well the incapacity of Teresa in this case. I had a situation, a family situation, and frankly, my my relative just passed away a couple weeks ago, but he had a friend slash caregiver who wound up moving his entire family into his house, put him in the back, like three-season porch to live in a chair, kept him drunk so he wouldn't complain because that's what he wanted.

29:42 Michael: He wanted his alcohol. As long as he was drunk and had his medication, this gentleman was happy and fine. And meanwhile, this family is living in his nice condo and taking advantage and and and probably, as you say, using his his services, using his, not his services, but his checks, you know, a social security check and whatever, other food stamps and things like that. Thank God it caught through elderly protective services, and we were able to put a kibosh on it, you know, 10 years ago, but not quite that long.

30:11 Michael: But but that I mean that is just frightening and horrific. And and and the fact that that Teresa is mentally challenged in terms of her decision-making abilities, right? And probably influenced by the quote-unquote friendship really brings this case to a whole other level. So how did the people finally wind up leaving, Angela?

30:36 SPEAKER_01: So she we ended up moving her, and I then so they didn't follow her to the next apartment because it was it was an apartment building that you know there would have been more you know, people and and levels of security in there, whereas the other building she was in like a high-rise eight, you know, floor building.

30:56 Michael: You know, that sucks. That sucks for her that these assholes got this situation to the extent where she had to up her life and move on because of them. That sucks. You know, that's a shitty resolution to a to a shitty situation.

31:13 SPEAKER_00: Yeah, I think I think this scenario happens, Michael, more often than we think, though. I think we're working with a vulnerable population that's lonely. And I'm just thinking of my stepfather recently. He had an aide who stole$200 from him. He had gone to the bank, she had had him upstairs, showering him where he was in the tub, and then ran downstairs. And and then she thought that he wasn't gonna know. And we all know my stepfather, he knows how much money he takes, like he knows his money. And she was banking on the fact that he was gonna seem like he had, you know, memory issues.

31:48 Michael: I just feel like this population is super vulnerable to it's not just it's just not it's not just persons with mental incapacity. The the guy that I just described, they uh one of the the aides stole his family heirloom ring in the nursing home. Yeah, I mean, this stuff it it happens. It's it's Sarah, you and I had a case where they they literally stole three and a half million dollars from a gentleman. Three and a half mil, no, three point nine million dollars was stolen.

32:19 SPEAKER_00: Right.

32:19 Michael: I mean, that's not smart.

32:22 SPEAKER_00: And that's an ethical dilemma. So what do you do? You have these caretakers that people view as family, right, and they're predatory and victimizing the folks that we service or our family members or whoever. I mean, it's it is an ethical dilemma. And what do you do? How far do you push it? My stepfather called the police. There was no, you know, there was there was that's do that.

32:45 Michael: Call the police. Absolutely.

Harm Reduction, Soda, And Quality Of Life

32:46 Michael: I mean, remember we had that case, we're calling him Mark here today. We had a case. Mark was this short little Portuguese guy, uh loved him. He he was just a fun, fun little guy. Diabetes, one of the worst cases of diabetes I ever saw or ever heard of. But boy, that guy loved his sweet, he could not get away from it, and he was just his diet was horrible, and the diabetes was gonna kill him because of his diet. And we really worked hard with him around his diet. But remember, Sarah, there is one thing he would not give up.

33:22 Michael: He drank two, two two-liter bottles of soda every day. So he drank four liters of soda every day. I don't remember what his soda choice was, but it doesn't make a difference. And he just would not give that up. And you know, I think I remember eventually just you know, in this case, I was a conservator, you were the worker, and and at the at one point we're just like, you know what? It's making the guy happy, and you know, and what are we gonna do? We can't stop him. I'm not gonna follow him around or with every time he goes past the uh soda machine and puts a dollar in and gets a soda out.

34:00 Michael: So sometimes, practically speaking, what can we do?

34:04 SPEAKER_00: So Mark's case had a very sad ending, and it still makes me sad to think about as we're talking about it because Mark is no longer with us. So we Michael, you're right. You did a harm reduction model on Mark with Mark because it was as quality of life versus the alternative, right? Which was denying him everything he loved, right? He loved that soda. And for a long time, for years and years and years, we did harm reduction with Mark. So he was able to balance his sweets with the diabetes, but eventually it caught up with him and his medical condition deteriorated so much so that he ended up in a skilled nursing facility.

34:43 SPEAKER_00: And so he was actually ended up in a locked skilled nursing facility. And at the time, we were trying to work with his providers to get him to a place where it wasn't locked, where he could have free access to the community. And that was an ethical dilemma because at that point we were the ones advocating for, you know, allowing him to have some of these things that soda, soda that could harm him. He wasn't out using substances, he wasn't out, you know.

35:12 Michael: No, because because in that when he was in that facility, um and and this is a trajectory very often for advanced diabetes and advanced age, etc. We know that you go to a facility, he had he had mental health issues and he had memory issues, so a lock facility made sense. But because he was in there and he had these issues, the doctors on and and staff are like, Well, no soda, you can't have and we were like, dude, the soda is what he, you know, that's his if you gave him the soda, he'd be your your your perfect patient.

35:41 Michael: And they uh understandably have that their own ethical dilemma about I know the soda's killing them, I can't give it to him. It's such a it's and it and it's sad.

35:50 SPEAKER_00: And so here was the ethical dilemma though that I faced at the end. So he had he had been on an open unit on the skilled nursing facility. He left to go get soda. So instead of working with him on, you know, maybe taking him out to go get soda, what they did a knee-jerk reaction and put him on the left unit. And within six months to a year, I can't remember because it was a while ago.

36:14 Michael: It was short.

36:14 SPEAKER_00: He had he had failure to thrive. He had lost his will to live, which sometimes we see with folks who go into skilled nursing facilities. He had lost his will to live and didn't eat anymore, despite our best efforts. And that also became an ethical dilemma because I advocated for him to go to the hospital for psychiatric condition and you know that that the nursing home.

36:37 Michael: Yeah, it knocked over a lot of dominoes in this case. It really doesn't. I I forgot about all this stuff to be honest with you. I just tried to leave it sort of surface level, but yeah, this did bring up a lot. But and I do remember that that he he passed away pretty quick. Once he decided he was gonna pass away, he passed away pretty quickly, which, you know, for him may have been a blessing.

Caregiving Mental Load And The Journal

36:56 Michael: And and and 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.

37:35 Michael: 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.

38:10 Michael: 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.

38:44 Michael: That's somebody else's decision to make. I'm not mine, you know.

38:47 SPEAKER_00: But it shows that we have to balance. We can't just there's no cookie cutter, like for, and I know we're gonna talk about George, but there's no cookie cutter decision here. I mean, because look at here, everybody in, you know, all the medical providers thought they were doing right by Mark, right? When really they were taking away the one thing that was giving him joy in life.

39:07 SPEAKER_01: Yeah, yeah. Yeah, it goes back to the cigarettes too, right? I mean, the whole smoking of cigarettes has been, you know, such a uh a back and forth for providers and clients and the system, you know. And you guys remember when my grandmother died.

39:23 Michael: When my grandmother died the last day she was alive, we wheeled her, we wheeled her out of hospice in her hospice bed to smoke a cigarette, right? She's smoking, she she died that day. But you know, that was her thing, man. She had to have those smokes. Cigarettes are a big one for sure. So you brought it up, sir. So why don't you why don't you just go right ahead and and introduce George? But because this topic is what the best way I can say it is allowing a client to fail, right? We have to at some point be I don't even know.

40:01 Michael: We we have to be okay with allowing a client to make bad choices, knowing that they're gonna set them back. We have to allow them to fail, and where we draw that line becomes a real tough call for the courts and for us individuals making big-time decisions for people.

Court-Ordered Freedom And The Safety Net

40:16 Michael: So tell us tell us about George.

40:19 SPEAKER_00: So George was a young adult, and George had, you know, quite the history of substance use in the community, didn't take his medications as prescribed, so he would often end up floridly psychotic, delusional, having auditory hallucinations, visual, visual hallucinations, um, and was was quite tortured by some of his symptoms. So oftentimes he would end up homeless on the streets, panhandling for money. He had gotten assaulted numerous times on the streets. He was a young kid, so he he didn't really kind of fit into the street culture.

40:53 SPEAKER_00: And so he was just really at risk. So his team worked diligently to try to get him to the hospital and eventually had him committed to a state hospital. So during his course at the state hospital, they had tried different medications. You know, he they had offered him different rehab groups, and he was right in the middle of his course of treatment. They still hadn't found a really good cocktail to treat the hallucinations or delusions. You know, the I don't even think they touched the substance use, you know, topics because they were still trying to get him psychiatrically stable.

41:29 SPEAKER_00: But he had gotten advocates involved because he didn't want to be in the hospital. He felt like it was his right to be out on the streets making decisions, even if it put his life in danger. So, long story short, the inpatient team and the outpatient team did not feel like he was ready to come out. However, the advocates requested a court hearing, which happens very often when you have someone who doesn't want to be in a state hospital for treatment, right? They have rights. And so it triggers a court hearing.

42:01 SPEAKER_00: And the advocates put on their case, and basically their case was he has the capacity to make these really poor decisions. And we need to allow him to make these really poor decisions. And then, of course, at the court hearing, he came and said, Oh, I'm gonna be sober, I'm gonna do this, I'm gonna take my meds, I'm gonna, you know, every every for that five minutes, he was able to pull it together and say everything that the judge needed to hear. So he was discharged that day to a program that we call uh do we have them throughout the state of Connecticut.

42:32 SPEAKER_00: They're they're called recipite programs, they're like temporary housing uh with 24-hour staffing. And that night he went to a dumpster and found some needles of God knows what and injected them and took medications that were discarded and ended up in a really serious medical crisis. So that to me was just again, there was the process had to happen, but it wasn't the outcome that we were looking for.

43:01 Michael: Well, no, of course it wasn't the outcome we were looking for. And it that's that gets me back to that argument that that I I I say, you know, we can't know with any degree of certainty. Nobody has a crystal ball, nobody knows anything 100%. But boy, we can make some pretty strong predictions about what what what's gonna happen or how a client or patient or loved one will more than likely act. We knew that this guy wasn't ready, was not ready, but you turn it over to the court and you bring in the right team of lawyers or whatever that may look like, and the criteria sometimes is such that their hands are tied and they say, you know, we we are bound legally, ethically to protect and preserve this gentleman's rights.

43:50 Michael: And yes, and frankly, sometimes, of course, just get fed up with with the hospitals. You guys have had this guy for six months, and this is as good as he's getting. Well, guess what? I'm gonna let him go because it's not doing him any good here. Let's give him another chance. You know, maybe he'll thrive as we were just talking about with other people in a setting that he's choosing and he'll find more quality of life for himself. Who knows? I mean, but we have, I mean, there's plenty of there's plenty of those I told you so moments that we could we could probably point to or gotcha.

44:21 Michael: And I know this is not about gotcha or I told you so, but there are cases where this comes up and and we do we do see it. And I think as family members, caregivers, providers, we can we we can certainly make reasonably predictive assumptions about what will likely happen. Um given.

44:42 SPEAKER_00: You know what's important about his case though, Michael? We were the safety net. So uh instead of doing the I told you someone pointing the fingers and you know, I was right, we swooped in as soon as that happened. We ended up getting back into the state hospital for a further treatment.

44:59 Michael: But I feel like that's where the safety net has to be, you know, that's where people need to say I'm glad you brought up the safety net because the safety net the the the role that we we have in our in our work is to be. The person who knows this entire history, the entire history of this case, the up to the minute information about what's going on with this particular individual, where he went yesterday, what he's doing today, you know, and we were able to, because of all of that information, we were able to talk to again the powers that be, and as you say, got him back into the facility.

45:36 Michael: That's the power, folks, of keeping something like the care navigator.

45:41 SPEAKER_00: I was just gonna say the care chain with plug. Not to plug your care job, but that is yes, that is that is the reason because if you can have the history right at your fingertips and have a document you can just send over to the attorneys in the court, that is that is the reason to keep the care the career.

46:00 Michael: I mean, it is it's it's a perfect example of the why you keep your records meticulous. Don't be haphazard about it.

46:07 SPEAKER_00: Yeah, not all over the place.

46:08 Michael: Yeah, don't be haphazard, know your stuff. Know your stuff. Angela, I want you to talk about Martha because this is another one of those that just went horribly wrong.

Wellness Checks That Miss The Danger

46:20 Michael: And it's another, I don't know if it's as much of an I told you so, but tell us about it.

46:25 SPEAKER_01: A teach of a moment. It was a little bit of a combination of both. So it's a teacher. Yes. Yeah, so similar, similar situation, right? You're in a state hospital, you know, saying okay, but not great, needs to have a certain level of care. Everybody's working on getting this certain level of care, the legal rights that are now involved because it's taking too long for this level of care to have a bed, right? I mean, this is the classic scenario of really kind of what the system is dealing with right now.

46:56 SPEAKER_01: And so Martha had a friend, and this friend came in and said, I can take her with me, and she can come live with me in another town that was not anything anywhere near where she originally had been residing. And so the advocates and the client really advocated really hard that they were gonna have this discharge plan to this friend. It was a safe place to go. You know, she was gonna get connected to the outpatient services in this new area. She was agreeing to all the services, all the things. Unfortunately, we didn't feel like we had enough to say she couldn't go there, right?

47:32 SPEAKER_01: It was a person that came into the team and said he would be responsible and help and till she could get into this other residential program. And so she ended up getting discharged to this friend's house. And within two days, she moved back into a house that was already condemned. It hadn't been condemned. It was in the process of being condemned. And so she was able to get back into this house that was not safe and then had a very, very dangerous situation where there was no heat in the house, and she ended up turning on her stove and caused a fire.

48:07 SPEAKER_01: And then once emergency services were able to get in there, they found out she had frostbite and was in really, really poor condition.

48:14 SPEAKER_00: So can you talk a little bit about though that the outreaches that were done? Because I feel like that's the teachable moment that that you know, we we knew there were there were risks. And again, getting the community and getting people to respond was was challenging on this case too.

48:30 SPEAKER_01: Yeah. So when she ended up back into this house, we already all knew that was not a safe house to be in. Every time we would call for a crisis outreach or to the police for a wellness check, pretty much what was happening is they were talking to her through the door, and they were saying, and she was saying, I'm fine, everything's fine, don't worry about me, I don't need anything. And no one actually entered the house. Nobody saw her, nobody had eyes on. Right, no one had eyes on. It was just trusting what she was saying when we all knew that she hadn't been on medication, that the house was already in poor condition, the house was getting in even more poor condition, which didn't have working plumbing, right?

49:07 SPEAKER_01: What's that?

49:08 SPEAKER_00: It didn't have working plumbing, right?

49:10 SPEAKER_01: It had but it had plumbing, but it wasn't at the the we weren't really a hundred percent sure what was really functioning in the house because it was also a house that was very cluttered with a lot of things, almost bordering hoarding. So it was really hard to know. And this was prior to her going back into the house, and we already knew that there were these challenges in this house. But the the thing is that they just thought it was good enough to hear her voice, and it wasn't good enough to just hear her voice.

49:36 SPEAKER_01: And then what happened was they were turning around to leave after she said everything was fine, and that's when the fire they noticed the fire.

49:44 unknown: Oh my god.

49:45 SPEAKER_01: And that was really the only reason why they got into the house and and found what was really going on in there. So it took such a serious incident, which could have been prevented. We were trying to be proactive, we were trying to get people to see the risk, but because they were not seeing her physically, we missed it.

50:05 Michael: So they're walking away, they knock on the door, yeah. I'm fine, thank you very much. See you later. Have a good time. You're alive, they're walking away. What's that smell? Yeah, this smells like fire.

50:16 SPEAKER_00: So I'm like, well, what is the law? What is the law around that? Because they clearly check the box. Okay, you're alive, great. Okay, nice to nice to know you. What is the law about entering people's homes without permission if you're doing a wellness check? Like is a wellness check just physically looking at them and seeing that they're alive?

50:35 Michael: Or who's doing the wellness check? Is it the police?

50:37 SPEAKER_00: This was the police, yeah.

50:40 Michael: And I think that the police bring it to a I think the police can bring it to a whole new level. I think the police have the ability to go in and physically but but but put yourself in their situation too. I mean let's take out the cynical side of not wanting to have the two do the paperwork or explain why we busted the door down. But you know, there's it's they're humans, they're human beings, and they're talking to somebody who, for all intents and purposes to them, sounds like a a lucid or at least somewhat coherent person.

51:12 SPEAKER_01: They have yeah, in all fairness, right? I mean, they had gone out and she had been fine a couple of times, right? And she could kind of pull herself together, you know. But as she progressively got worse, so they missed it. Like I feel like they got a little complacent because they kind of knew her, right? Because it's not the first call, definitely wasn't gonna be the last call, but they they didn't see the progression that we were trying to stress than the urgency of why we kept calling them.

51:39 Michael: And I think that complacency, and that's complacency is a bad word. We're not trying to make it a bad word here, we're just trying to say that as you say, they got accustomed to her being the way she was, and she was able to maintain that level of presence. Right. And lo and behold, well, their kitchen's on fire. At least it was warm.

52:05 SPEAKER_01: I was kidding.

52:06 unknown: Yeah.

52:09 SPEAKER_00: Had they not been there, that could have been disastrous, and again, would have could have ended in loss of life. And I think that's what we're talking about today in some of these cases is you know, what what can the potential outcomes be? And we don't know, we don't have a crystal ball.

52:27 Michael: No, I and and and I just I don't I don't want to, I'm gonna open up a can of worms here that we're not going to discuss, but I do want to discuss one thing that that we have been through maybe two times in the entire time that the three of us have been working together, where there is this this level, what we're talking about here, this level of push and pull and rights versus duties or refusal to treat. And maybe this is the the discussion that we should get into in another episode, but I mean we have had a situation where we have kicked this uh case up, cases, and it wasn't us just kicking it up, it was the entire system from the commissioner's office down to say, okay, guys, here's a case that is really perplexing to all of us.

53:17 Michael: Yeah, this particular individual is just not one responding to anything that we're doing, two, doesn't want us involved anyway. So what are we all doing? Who's chasing who around? Why are we all doing it? The client hates us anyhow. And folks, it does happen where you have high, high, high-level meetings with a lot of input from a lot of players for some of these uh departments to make a decision as to whether or not it is time to give up the ghost and say we've done everything we can do. This patient has done everything they can do.

53:54 Michael: And that that does happen. That is not the case that I want to talk about here today. That is not the case. Again, I'm leaving that sort of a uh hanging chad out there that that that has happened in our in our experience as well. But uh I'm gonna leave it here.

No Perfect Manual, Just Hard Tradeoffs

54:09 Michael: I think these are great discussions. Again, some of them have answers, some of them don't have answers. That's the point of this podcast is to put put it out there for you guys that uh what you're experiencing with your particular case may or may not be unique. Share your stories, uh share your your thoughts and your comments, get the Care Navigator Journal so you can keep really good records and keep abreast of your loved ones situation. And uh, you know, we have plenty of plenty of these uh stories, these vignettes for you guys that interestingly enough, we could probably break down into short little segments and put out there for you all to listen to as well.

54:48 Michael: So again, thanks, Sarah and Angela, for being here today. Thank you guys all for listening. And by the way, our podcast is doing amazing in just the few short weeks that we've been doing it. We're already over 4,000 downloads and we have yeah, it's really going well. So thanks to everybody for your support.

55:07 SPEAKER_04: Thank you guys.

55:07 Michael: Thank you to you guys for your support and helping me to put it out there, and we'll talk again soon.

55:13 SPEAKER_01: Bye. Bye.

55:20 Michael: There's no perfect manual for these stories, folks. There's no right or wrong answer there. You can't just call up and say, What do I get? This is not a one-size-fits-all policy. But we force our own definitions of safety or best interest onto others. Uh very often we risk losing the very thing we're supposed to be fostering, which is humanity and dignity. Bringing these cases before a judge sometimes it's necessary, it's not necessary, it's not a division of the fee. It's not it becomes an act of play and responsibility.