Caregiver Misconceptions with ("Host") Victoria Cuore

Welcome And Why This Matters

Michael: Hello, everybody, and welcome back.

Michael: I am Michael McNak.

Michael: This is the Holding It Together kinda podcast.

Michael: And I've asked my dear friend and partner in crime and the what it takes and the care coalition venture to join me today because I hate listening to podcasts where one person is talking at me.

Michael: So I don't want to be that guy that does that to you.

Michael: So Victoria Cure is here with me to sort of probably argue with me about topics that I want to discuss with you because these came up this week.

Michael: I have had this particular tool in my arsenal for probably two decades, no joke.

Michael: So, what this is all about today is I want to talk to you very pointedly and very matter-of-factly about misconceptions that families have, about their abilities as caregivers and their abilities as fiduciary, if appointed, and also the abilities or the inabilities about some of the other people that you run into in the journey along the way, caregiving people, you know, providers, doctors, case managers, and whatnot.

Michael: So I call this my five misconceptions that caregivers and fiduciaries might have, or that we may have about fiduciaries and caregivers.

Michael: So I've handed my script, so to speak, my to to Victoria, so she could sort of be the proctor to get me fired up rather than me usually having to get her fired up, which doesn't take a lot, not gonna lie.

Michael: Good morning, Victoria.

Michael: How are you?

SPEAKER_01: Good morning, Sunshine.

SPEAKER_01: I see you're in rare form this morning.

Michael: Oh, I'm in rare form.

Michael: I think rare form for like two weeks straight right now.

Michael: And I gotta get out of it.

SPEAKER_01: But yes, you do.

Michael: Anyway, what do you think about the topic as I just described it and some of the things that I you know what I want to talk about today?

SPEAKER_01: Absolutely.

SPEAKER_01: And of course, thank you for letting me come on here and rile you up because I don't think it takes much for me to do.

SPEAKER_01: But I nope, I can just show up and rail you up.

SPEAKER_01: But uh but that's what makes us so great.

SPEAKER_01: We're yin and yang.

SPEAKER_01: Like he laughs at that.

SPEAKER_01: Like I'm the organized, he's the disorganized.

SPEAKER_01: I mean, it all works.

SPEAKER_01: It's it's great.

Misdiagnosis And Medication Reality

SPEAKER_01: So I think there's a lot of misconception when it comes to just the whole realm of mental illness, because like, for instance, somebody is so quick in the medical profession to say, I don't want to treat the problem, I just want to like sedate it.

SPEAKER_01: I want to, you know, just put them over there and not go in and and do, you know, an analysis.

SPEAKER_01: Go in there and learn about what's going on with the person.

SPEAKER_01: Let's just not even know the history, let's just restrain them and drug them and treat them with a pill.

SPEAKER_01: And then we're learning more and more that insurance is like, no, we're gonna keep them if they have good insurance.

SPEAKER_01: And there's so much misconception.

SPEAKER_01: Like, I've I've actually, you know, been an advocate for so many people that are like, they're depressed, but they're depressed because their loved one just died.

SPEAKER_01: That doesn't mean they're suffering from depression.

SPEAKER_01: It's a depressed because they lost someone.

SPEAKER_01: So I'm so glad you're doing this because there are so many truths about mental illness that really haven't come to fruition for people.

SPEAKER_01: Like, for instance, mental illness is treated much like any other illness.

SPEAKER_01: I don't agree with that at all.

SPEAKER_01: I think that is completely out in left field.

SPEAKER_01: What do you think about that?

SPEAKER_01: Like that people just say, okay, well, you have a mental illness because you're depressed and it's depression, but it's not situational, but they want to call it that way.

Michael: Well, I I think the interesting thing is that it's hard for me to say to believe that we still have to talk about it this way, but it's true.

Michael: And I think families are guilty of this, and I think some of the providers and professionals are guilty of this, particularly those who who don't see it very often.

Michael: And that that really points directly to family members who don't see it.

Michael: Mental illness cannot be treated like any other illness.

Michael: We want to accept mental illness into our society and accept it like it's any other illness.

Michael: You know, we we accept people with cancer, okay, in into our society, and we and we feel for them, we have empathy for them.

Michael: You know, we even some of the things that we've overcome as a as a society in terms of the taboos, we talk openly about breast cancer now, right?

Michael: Which we never never talked about.

SPEAKER_01: 20 years ago, never again.

Michael: Right.

Michael: I mean, I my mom had breast cancer when I was 16 years old, and that was like the first time I'd ever spoken or or talked about it with anybody.

SPEAKER_02: Right.

Michael: So that's 30 years, 40 years ago.

SPEAKER_01: You're feeling your age.

Michael: So I know.

Michael: So even you know, even before that, it it was less and less, right?

Michael: But now we talk about it openly and honestly.

Michael: Think about what Mrs.

Michael: Kennedy did for folks with developmental disabilities, or we used to call it mental retardation back then.

Michael: And now we talk openly and honestly about that.

Michael: And and and it's not something that's closeted, and it's not something that's hidden.

Michael: Well, I think that's an ongoing issue with with with regard to illnesses, particularly mental illnesses, that that we can't see.

Michael: So people come in and we think that we can well give them a pill.

Michael: And this is one thing you're you're very fond of talking about.

Michael: Give him a pill, sedate them.

Michael: There's gotta be there's gotta be a drug.

Michael: There's gotta be a he's got schizophrenia, here's how we treat it.

Michael: He's got bipolar, here's how we treat it.

Michael: And folks, a friend of mine died a few years ago of cancer.

Michael: Died within a year of diagnosis, and and he really you know suffered with it.

Michael: And I learned so much about cancer at that time.

Michael: Every cancer is different, just like a mental illness, everything's different.

Michael: Even if you say you have lung cancer, the type of lung cancer that you have can be different than the lung cancer that Victoria has or I have.

Michael: In the way that your pancreas metastasizes what we call cancer.

Michael: Cancer just means something bad, poison eating your good cells is what it is.

Michael: So mental illness is very much the same way.

Michael: Not every mental illness pill A will work for, not every mental illness pill B will work for.

Michael: And it takes a long time, folks, for people, providers, doctors, professionals to figure out the right quote unquote cocktail of what medication will work for you.

Michael: I always had sort of like depression and and mood sort of disorders.

Michael: I know you can't believe that one, Victoria.

Michael: But but it took, and it took a long time from the first time I went to see a psychiatrist to finally find landing a cocktail of clonozepam and fluoxetine that works great for me.

Michael: And guess what?

Michael: It's been working great for me for 20 years, and I don't change it, they don't change it, nothing changes, and it's just been great.

Michael: And you know, maybe someday I'll experiment with saying, well, I don't need this, I don't need that, but it ain't broke, I'm not fixing it.

Michael: Anyway, that's just my disclosure and by way of example, showing you it doesn't happen overnight.

Michael: Even when you find a drug or something that seems to work, it takes weeks, if not months, to titrate into your system.

Michael: So, no, we cannot treat mental illnesses like every other illness.

Michael: It's not a broken leg that we can set, cast, and it will heal on its own.

Michael: So, folks need to be very cognizant of that when they start out on this on this adventure, on this, on this journey.

Crisis Care: Baseline Advocacy

SPEAKER_01: Yeah.

SPEAKER_01: And one thing I want to, because this is something I get very fired up about, is so quickly that people automatically, like if somebody is 1013 or somebody, you know, is put in.

SPEAKER_01: I was about to tell them.

SPEAKER_01: See, this is how he fires me up.

SPEAKER_01: So if somebody was 1013 or somebody was put in for a psychological evaluation, then immediately if they're in a situation where they're having an event per se, it's you know, some people are like, Well, it's an event.

SPEAKER_01: And I had a family one time say, My daughter has epilepsy.

SPEAKER_01: Epilepsy does not have my daughter, but she has episodes of seizures.

SPEAKER_01: It's like a mental illness situation where they have an episode, a mental healthness episode.

SPEAKER_01: Well, if they have an episode at that moment, the the doctors and the therapists and everybody else is just so quick to say, okay, let's sedate them, let's, you know, go in there and restrain them and we'll deal with it later.

SPEAKER_01: And then I'll do an eval.

SPEAKER_01: But you're doing an eval under the influence.

SPEAKER_01: If we can't drive under the influence, if we can't operate other machinery under the influence, how can you give us an appropriate psychological evaluation under the influence?

SPEAKER_01: So at that time, don't you think it's a bad or is it a good time for somebody to step in and interfere for that person as an advocate?

Michael: Well, I think one of the best things that we can do at that point in time is a step in as an advocate and say, this is not his baseline, this is not her baseline.

Michael: Because I think that's what you mean when you're saying under the influence, right?

Michael: Yes.

Michael: And then quickly sedated.

Michael: In the throes of a epileptic seizure, clearly you are not yourself.

Michael: In the throes of acute or florid psychosis, you are clearly not yourself.

Michael: One of the things that you and I talked to Rebecca Iantoni about was how important it is for families to get in there and and be brave and and tell the doctors or the the providers, the staff.

SPEAKER_01: She's a powerhouse mom.

SPEAKER_01: She's a special needs mom.

SPEAKER_01: Y'all need to go back and check that episode out.

Michael: And so are all the people that we're trying to encourage to do this kind of work.

Michael: Get in there and say, This is not my son, my daughter's baseline.

Michael: I mean, Rebecca takes it as far as here's a video of him as his baseline.

Michael: This is what he's normally like.

Michael: Right now, this is not him.

Michael: And and and that's a very important advocacy hack, I don't know, advocacy tip.

Michael: One of the things that you may run into, and this is on my list of misconceptions that you have in your hand.

Michael: When you try to be that advocate, see this transition that I'm doing right here.

SPEAKER_01: Oh, is that what that is?

SPEAKER_01: Okay, I thought you were making fun of the hand.

HIPAA: Listening Versus Disclosing

SPEAKER_01: Go ahead.

Michael: How the pros do it, Victoria.

SPEAKER_01: The pros.

SPEAKER_01: He's learning from me.

Michael: One thing that you may run into as you as you get into this is the the the roadblock of HIPAA.

Michael: Can't talk to you because of HIPAA.

Michael: I can't talk to you, I can't listen to you.

Michael: I don't want to know what he looks like when he's at baseline because of HIPAA.

Michael: Let me just say this emphatically.

Michael: I will stand up if I have to, but if I do, all you'll see is in the stomach.

SPEAKER_01: I don't see anything.

SPEAKER_01: Go ahead and do it again.

Michael: Yeah, right.

Michael: There is no law.

Michael: HIPAA, privacy, confidentiality, civil rights, whatever you want to go.

Michael: There's no law that says that I, as a provider, a physician, a nurse, a case manager, cannot listen to Victoria giving me information about her loved one.

SPEAKER_01: Okay, counselor.

SPEAKER_01: Hold on.

SPEAKER_01: So let me ask you: let's say, hypothetically, Joey Bagadonuts and wife Joanne are in the hospital.

SPEAKER_01: Joey is incapacitated for whatever reason.

SPEAKER_01: It's a mental health issue.

SPEAKER_01: They've sedated him.

SPEAKER_01: They won't listen to her.

SPEAKER_01: Why can they say HIPAA is applicable to that situation?

SPEAKER_01: But Joey Bagadonuts comes in on an ambulance and he's unconscious, then they call their emergency contact and they listen to them.

SPEAKER_01: How come that's a double standard?

SPEAKER_01: I don't understand that.

SPEAKER_01: Can you explain that to people for me?

Michael: No, I can't.

Michael: It is absolutely a double standard because I say this all the time too.

Michael: I say you have to live within the reality and the practicality of the law and the reality and the practical tech practicality of what the doctor is going through at the time the doctor is going through it.

Michael: As you know, I don't want to sit here and beat up and and and paint with a very broad brush about the way that people are treated in facilities.

Michael: But but the reality of it is that you can come into my law office and I could put together for you my packet of materials, which actually Victoria and I are going to make available for you, which is, you know, you have your living will and testament, you have your, I mean, your last will and testament, your living will, your healthcare proxy, your designation of conservator or guardianship attorney.

Michael: Durable power of attorney.

Michael: Not just power of attending, not just power of attorney, durable power of attorney.

SPEAKER_01: I was gonna say that next.

Michael: So you could go, you go into you can come into my office and I could put all that together.

Michael: The reality of it is, is that if I'm standing there and my wife is in the hospital bed, the doctor is going to come to me and ask me what's up, what are we doing?

Michael: What does she what would her wishes be?

Michael: Right.

Michael: That's just the way we've been practicing, we've been taught to practice, and I'm saying they, doctors.

Michael: That's how it's done in hospitals.

Michael: It's very easy for them to say, however, if they know that the husband is off his rocker, we can't rely on what this guy's telling us.

Michael: I can't, I can't do that, sir, because I need to know who the power of attorney is or who the designated healthcare agent is.

Michael: So, in that regard, you're absolutely right, Victoria.

Michael: It's a great way for people to have their cake and eat it too.

Michael: They could they could use it to protect themselves or or they can use you there or they can benefit from it as it helps them to apply their trade, their craft, their science to the patient.

Michael: And your example is a good one where, hey, we had this guy in here, he was really off the hook.

Michael: We needed to sedate him, right?

Michael: But before we did that, we got a good general sense of where he's at and what we're gonna do.

Michael: Therefore, we don't need information versus somebody who came in here unconscious, we don't know anything about them, and therefore we want to get information from you.

Michael: So that's and there there's goes back to the distinction.

Michael: Get information from you.

Michael: Tell us all about this, Victoria, because we don't know your loved one from Adam, is very different than we're not going to listen to anything you say because we think we know better or or whatever the case may be.

Michael: Again, we use HIPAA, the term HIPAA, like we use the term band-aid or q-tip or kleenex.

Michael: It is a brand name.

Michael: Think of it that way, folks.

Michael: It's a brand name that we use to apply to generic applications.

Michael: We don't use a cotton swab, we do not use a tissue.

Michael: Well, some people do say tissue.

Michael: We don't use an adhesive bandage, we use a band-aid.

SPEAKER_02: Right.

Michael: So HIPAA is how we say anything on a macro level, anything that has to do with privacy, confidentiality, we couch under HIPAA.

Michael: And we should really do a HIPAA.

SPEAKER_01: I would love it.

SPEAKER_01: I would I'm telling you, want to see me fired up, talk about HIPAA, because I can't tell you how many families I advocate for when I'm in the hospitals and I'm in there helping, and I'm like, I will go out there onto the nurses, you know, nursing station, and they're out there talking about it.

SPEAKER_01: I'm like, I'm sorry, does anybody know what HIPAA is?

SPEAKER_01: Because there's a there's a cleaning lady right here, there's a janitor right here, there's somebody else right here, and you're talking about my client.

SPEAKER_01: Like, does HIPAA not matter because you won't even go in here and talk to them?

SPEAKER_01: You won't listen to mom, you won't listen to that because your child's 19, but mentally she's 10, but you don't know that because you won't listen to mom.

SPEAKER_01: You know, I also tell everybody, also, and I'm gonna give this a little tidbit on, is that if especially if you are in a situation, regardless of your situation, if you have the appropriate documents that Mike was talking about, you can have them already on file at the hospital.

SPEAKER_01: You can do that.

SPEAKER_01: And I'm telling you, I can't tell you how many times between mine and my daughter's surgeries and my clients' times I've been in there with clients, they don't, A, they don't talk to each other, and B, they don't look.

SPEAKER_01: Whatever this my chart is, is a foreign language to them.

SPEAKER_01: They don't check it out and look at it.

SPEAKER_01: You've got like three minutes of research that they do before they come in there and give you eight, nine minutes of their time and they're done.

SPEAKER_01: That's it.

SPEAKER_01: And there's no way they're gonna know everything about a complex person in three minutes.

Michael: And you bring up a good point because let's say that an individual is struggling with mental health issues and they wind up going to the hospital, they they're in the emergency room.

Michael: The providers, and and and if it's an emergent situation, you can almost understand this.

Michael: But if a person is admitted to the hospital as you just described, you can't understand it.

Michael: Where the provider doesn't do their research to go and look at their old records, right?

Michael: Because records aren't just thrown away.

Michael: I mean, we can look up and say, hey, Mike Makniak was here last year.

Michael: Oh, look at he's got a conservator, he's got a guardian.

Michael: And you cannot rely on it on an individual who is floridly psychotic to say to you, I have a conservator, I have a guardian.

Michael: Her name is Victoria Cure.

Michael: Here's her phone number, right?

Michael: So many times we have folks that wind up in medical and hospital settings, and the hospital doesn't even know that there's a person out there who is responsible or who should be getting the phone calls.

Michael: So it's very easy for us to say, God damn it, why didn't you call me?

Michael: I'm the take a step back, take a deep breath.

Michael: I'm looking right at you, Victoria, as I say this.

Michael: We gotta, you know, sometimes how should they have known?

Michael: How could they have known?

Michael: Yeah, they probably could go back and look at the records, but if this is a new patient, a new new situation to them altogether, those records may not be there, too.

Michael: Right.

Michael: So, so to your point, it is very important that if you are a frequent flyer in the hospital or your client, your family member, your ward is a frequent flyer to the hospital, just you know, make sure that they have the records there.

Michael: Uh quick anecdote.

Michael: I have a client who is there's two hospitals that she picks, depending on which ones will give her the drugs that she wants.

Michael: And when she when she shows up, it's to the point now we're like, oh, hey, you know, uh Catherine the PA, hey Catherine, so and so is there.

Michael: You know, I don't even have to know what she's calling.

Michael: If Catherine's calling me, I know who she's calling me about, and Catherine knows the story.

Michael: That's great because I mean it's great for us.

Michael: I don't have to re-regurgitate the whole long story, but sometimes it's very frustrating when you do have to regurgitate that story.

Michael: But the but the point of this whole discussion was Catherine should listen to me in regurgitating that story.

The Two-Line HIPAA Script

Michael: Catherine should take the information that I have.

Michael: And one of the tricks that we talked about, I know we talked about it with Rebecca, was when you get Catherine on the phone, folks, say, write this down.

Michael: This is a script.

Michael: I'm gonna give it to you right now.

Michael: I know that you cannot confirm nor deny that my daughter is in your hospital.

Michael: However, if my daughter is in your hospital, I'm not asking you at this point to disclose information to me.

Michael: I just want you to listen while I disclose information to you.

SPEAKER_02: Right.

Michael: That's a great little two-line script that we should probably put in the show notes here for people to copy, keep it by your phone, and have it.

SPEAKER_01: Okay, counselor.

SPEAKER_01: So here's my question to you.

SPEAKER_01: If HIPAA says they're here to protect you and everything, what happens when they said, Oh, we can't even tell you if they're here, blah, blah, blah.

SPEAKER_01: Oh, really?

SPEAKER_01: I'll pick up the phone and call the hospital and say patient information.

SPEAKER_01: Is this a person that's in your hospital?

SPEAKER_01: And what room are they in?

SPEAKER_01: And they tell you.

SPEAKER_01: And just what happens to HIPAA?

Michael: Well, you just say, Hey, I'd like to talk to the nurses station and they talk to you.

Michael: And I know listen, and and again, that's not a HIPAA, that's that's not really a HIPAA.

Michael: You're using the the broad term HIPAA to have this discussion there, and that's and that's fair.

Michael: But you're absolutely right.

Michael: That is there are there are a lot of hypocritical applications.

Michael: I think that there's a lot of times where we hide behind HIPAA.

Michael: And I think that there's a lot of people who don't know what HIPAA really means.

Michael: And one of the things that I set out to do years ago is to educate providers very succinctly about what HIPAA means, at least, and I don't get too far into the the computer technical side of it, but understand what what it says.

Michael: And again, we we probably should do and will do a HIPAA, probably in this platform where we can go through the rules.

Michael: I mean, HIPAA is really straightforward.

Michael: If you just follow it, it really lays out for itself really what it is.

Michael: I just don't think people, lay people and professionals take the time to read it.

SPEAKER_01: Right.

Lawyers Serve Clients, Not Families

SPEAKER_01: All right.

SPEAKER_01: So, counselor, is it true that attorneys are really only acting in the best interest of their loved ones?

Michael: No, it's not true.

Michael: Attorneys do not act in the best interest of your loved one.

Michael: That's a good that's a very good question, Victoria.

SPEAKER_02: Hmm.

Michael: Glad I put it down there for you to ask.

Michael: This is a family show, and she's giving me the finger on the family.

SPEAKER_01: I'm giving you a hand.

SPEAKER_01: That's all I'm saying.

Michael: That's all you got.

SPEAKER_01: Okay, here we go.

Michael: Listen, the reality of it is, folks, that an attorney's role, and this this comes into play a lot.

Michael: In fact, I spoke to a mom last night, 5:30, 6 o'clock at night.

Michael: An attorney's role is to do what their client wants them to do.

Michael: It is not necessarily to act in the best interest of a client.

Michael: Okay.

Michael: My role as a lawyer is to do what my client tells me they want me to do.

Michael: Very often we wind up in conflict about this because families are like they cannot understand why we would advocate something that would not be in their loved one's best interest.

Michael: Did I say that right?

SPEAKER_02: Yes.

Michael: Yeah.

Michael: And that gets people so pissed off, and it gets people to the point where they hate lawyers even more than they already do.

Michael: But a lawyer's ethical responsibility is to do right by their client.

Michael: Hopefully, doing right by your client means acting in their best interest, but it doesn't always.

Michael: Like, for instance, if a client is floridly psychotic, absolutely in need of hospitalization andor medication, but tells me as their lawyer that they don't want medication and they don't want to be hospitalized, my job is to go in there and advocate and zealously advocate and represent that my client doesn't want this.

SPEAKER_01: Even if that's what they need.

Michael: The other providers, the other people out there, their role is to come in and say all the reasons that the individual does need to stay.

Michael: Like that's that's as plain as I can make it.

SPEAKER_01: Like if the glove doesn't fit, acquit kind of thing.

Michael: Yeah, I guess so.

SPEAKER_01: I'm just saying.

Michael: You must acquit.

SPEAKER_01: So strategically, yeah.

SPEAKER_01: Should you be focusing around the disability of your loved ones when this is going on?

Talk Capabilities Before Limitations

Michael: Well, it's very easy for us to go into a room.

Michael: Let's say that we're at a hearing now.

Michael: We're having a probate hearing where the judges to decide whether or not my loved one, let's use you.

Michael: You are in a you are in a hearing where the judge is trying to decide whether or not your loved one should be involuntarily committed to a hospital or involuntarily medicated.

Michael: Okay.

Michael: I'm the lawyer.

Michael: I'm coming in representing your loved one, and I'm saying she doesn't want to be here.

Michael: She wants out, and you're jumping up and down, yelling and carrying on that this is BS, that you're not doing your job, and and and it's very normal, natural for you to go to she can't wash herself, she can't wash her clothes, she doesn't clean a room, she can't get to the grocery store, she doesn't do this, she doesn't do that, all those things.

Michael: And that is uh human nature, it is the way that we are programmed, it's the way that we are built, it's the way that we think things resonate.

Michael: But let me put it, let me put a spin on it.

Michael: Let me let me give you the paradigm shift.

Michael: And this is an important paradigm shift.

Michael: I think it goes a lot further if the family goes into the courtroom thinking of all of the positive things that their loved one can do.

Michael: So Victoria goes into the into the room now and says to the judge, Judge, here's you know what, my daughter is really great at X, Y, and Z.

Michael: But here's where she's really failing A, B, and C.

Michael: Oh, and by the way, while she's in this acute state of psychosis, or in your case, Victoria, perhaps while she's in this medical uh crisis, she cannot respond.

Michael: She does not understand, she's not making uh decisions that are that are in her best interest, etc.

Michael: etc.

Michael: That's the way to approach it.

Michael: It's she's really good at this, she's not so good at that, and right now, given the circumstances, she's really incapable of doing this.

Michael: Because the inquiries now, and I live in the Northeast, and up here, we have some of the best, most progressive approaches to this, which is very scary because if we're doing it really well, I can't imagine how badly some of the other places are doing it because we're doing it really poorly, but we're supposedly at the top of the game, right?

Michael: So the paradigm shift has been, and it's been codified, it's been made into law that we sh we need to we have to explore that which an individual is capable of before we start talking about all the things that they're incapable of.

Michael: So we want to assign duties of a fiduciary, of a guardian, of a conservator.

Michael: We want to assign their duties based in a more restrictive manner so that we explore that which they're capable of, right?

Michael: And then say to the to the to the fiduciary, here in this case it would be Victoria, uh, Victoria, because your loved one is not capable of doing those three, four things that you identified, I'm going to give you the limited authority to act in that capacity.

Michael: And I think that's how it should be, but that's not how things are typically done.

Michael: But but again, go into if you go into these discussions with the framework that you're going to talk about what your loved one is good at, and then also impress upon people where they're struggling, where they're what they're less capable of.

Michael: It really will attract more honey, so to speak, and it will be heard in a much more positive light.

Michael: Sarah at my office would call it the sandwich technique.

Michael: You start off talking about what they're really good at, maybe then you throw in what the things that are bad at, and then at the end you throw in what they're good at again.

Michael: And you know, so you sandwich in there the the hard stuff, right?

Michael: And it's just psych psychological, psychiatric or tech therapist way of talking to people, and it works, it really works.

Michael: So I I think that answers your question.

SPEAKER_01: It does, it does, it does.

Guardianship And Conservatorship Explained

SPEAKER_01: Now, there's a difference between a guardianship and a conservative ship.

SPEAKER_01: What is the difference?

Michael: It depends on where you live.

Michael: I use the term conservator up here, it rolls off my tongue because and by the way, conservator is the same thing as conservator.

Michael: That's what we that's what we term it up here.

Michael: Well, in Connecticut, that's what we term it, right?

Michael: New York, it's a guardian.

Michael: Where you are, I believe it's guardian.

SPEAKER_01: Now, what if it's not your child?

Michael: Okay, let me let me okay.

Michael: So where I'm from, a conservator or a conservator, and so if you're around the country and you use the term conservator or conservator, a conservator is only a fiduciary role that applies to adults.

Michael: Okay, a child does not get a conservator.

Michael: Okay, so a a individual let's just say for for ease of this discussion and this podcast in this audience, an individual who is over 18, who is struggling with mental illness, gets a conservator.

Michael: Okay.

Michael: This is the way that the law works in these states.

Michael: A person who is under 18 and needs, or no, a person who is over 18 in other states sometimes may be provided with what they call a guardian.

Michael: Okay.

Michael: Conservator guardian, no matter what it is, it's going to be differentiated.

Michael: You're going to break it down into conservator of person, where we're making decisions for a person's medical care, shelter, education sometimes, okay, or guardian of the same.

Michael: Or you can have a conservator of a state, where the conservator or guardian of a state is responsible for doing the banking, transactioning to transactions, the investments, and taking care of real property or individual property.

Michael: That is your conservator and guardian of a state.

Michael: You can also be appointed as conservator and guardian of both a state and person, person and state, which is typically how it how it works.

Michael: So in the states that use conservatorship, again, a conservator is only used for an adult, a person over 18 years old.

Michael: We talk about a guardian being what everybody knows.

Michael: A parent is the guardian of their child, right?

Michael: Think of it that way.

SPEAKER_01: A guardian of a minor child is how we what if they're physically over 18, but mentally they're not.

SPEAKER_01: So what would they get?

Michael: In in Connecticut and in states like Connecticut, we have a conservator for people who are, say, mentally ill or suffering from kind of some kind of mental incapacity.

Michael: If they are incapacitated due to an illness, a neuro illness, such as developmental disabilities, i.e., mental retardation back in the day.

Michael: Those folks who are over 18 are given a guardian.

Michael: And a guardian can be a plenary guardian, a temporary guardian, a standby guardian, a limited guardian.

Michael: There's various types of guardians.

Michael: So that's how we differentiate it.

Michael: And the best way to look at it is a child who doesn't have the well, the capacity, let's say, to make informed decisions for themselves is under guardianship until they're 18 years old, because we as a society had determined that at that's the good cutoff rate, right?

Michael: We could argue that it should be higher, it should be lower, but that's the way the law is written right now.

Michael: Similarly, if we have an adult, a person over 18 who has cognitive deficits, they are not necessarily going to be good at making decisions based upon those cognitive deficits, not because of an illness.

Michael: So they are given a guardian.

Michael: So that's why I think it makes sense.

Michael: In states like where you live, or states like Florida, California, they talk about guardians.

Michael: And a guardian is from a child, from the time a child is born till a child is 18.

Michael: And then you have a guardian appointed for an adult who needs it thereafter.

Michael: So it's just a con it's just a legal terminology.

Michael: It just pen depends on where you live.

Michael: I think most of the country probably talks about guardian and not conservator.

Michael: So I really need to get back into that habit.

SPEAKER_01: But uh, can it be revoked at any point?

Michael: Absolutely.

Michael: I I a judge that I am very fond of Jack Keys from New Haven, Connecticut.

Michael: He was the judge for I don't know, 35, 40 years, and his father was a judge before him.

Michael: So we had a Jack Keys in the in that probate court for you know like 70, 75 years or something crazy like that.

Michael: And Jack always said, nothing I do here is permanent.

Michael: We can always undo what we do here, and that's the beauty of the probate court system and working within that system.

Michael: A guardianship can be revoked.

Michael: In fact, under the law, a guardianship or a conservatorship, both, need to be reviewed on a regular basis, depending on where you live.

Michael: That could be every year, it could be every three years.

Michael: And basically, an attorney is appointed to go out, see the individual, and say, yeah, they still need this, or no, they don't need this anymore.

Michael: And it's a paper trail and they keep the paper trail going.

Michael: So absolutely, these things can be undone.

SPEAKER_01: See, that's great information.

Revoking Orders And Regular Reviews

SPEAKER_01: And we got all five answered.

Michael: Well, it it's hard because some people don't want to go down this road of I it's very sticky.

Michael: I don't know if I want to be guardianship.

Michael: I don't want my kid to hate me because I'm guardian of, you know, or I've applied for the guardianship.

Michael: And I and I think maybe this is our sixth misconception.

Michael: I think people need to be very, very careful about what they think a fiduciary has the ability to do.

Michael: We think, well, I'm the conservator, therefore I can have my son committed to a hospital.

Michael: I'm a I'm a I'm a guardian, therefore I can have my force my son to take medications.

Michael: If you think about it from a practical perspective, how the hell do you think you're gonna do that?

SPEAKER_02: Right.

Michael: How do you think that you are going to force your kid to live in an apartment that you got for them?

Michael: How do you think you can't get your 13-year-old to listen to you?

Michael: How do you think you're gonna get your 26-year-old son to listen to them?

Michael: So I really caution people, not only family members who think that the that the silver bullet is getting a conservator or a guardian appointed, but also when I when I do consulting to big teams who are saying we want to bring in a conservator, okay, why do you think you need a conservator?

Michael: Is the first question.

Michael: Is the conservat is getting a conservator or a guardian the least restrictive next step that we can take to treat or to provide for the loved one?

Michael: Because sometimes a conservator or guardian is just another warm body at the table who's taking up space and and limited in what they can achieve just as much as we are at this point.

Michael: And God knows we don't need more warm bodies at the table, you know.

Michael: So if if somebody asks me if a conservator can do X, Y, or Z, my typical answer is usually it depends, which is a lame answer.

Michael: And more often than not, it's no.

Michael: No, a conservator can't do what you just propose.

Michael: A judge can, a conservator can help you get in front of the judge with this request, but there's a process that you have to go through.

Michael: And and getting back to the original discussion or one of the discussions we really we had earlier was talking about that paradigm shift between looking at what a person is capable of versus what they're incapable of is hugely important.

Michael: And and going in front of the judge and saying, hey, here's what a conservator can bring to the table.

Michael: And I, as the attorney, my role is to say, we already have that lined up.

Michael: Yeah, he can't go grocery shopping, but he meets with his caseworker every week.

Michael: They sit down and they do and they have a peapod delivery come every week.

Michael: So he doesn't need to go to the grocery store.

Michael: That's taken care of.

Michael: We don't need a conservator for that.

Michael: We don't need a conservator to work on budgeting because we do that with him when we come into the independence center or the drop-in center.

Michael: So think about it in those terms.

Michael: Think about what resources are missing before you jump to the point of needing the biggest impediment or the biggest restriction on a person's rights, that is a fiduciary to come in involuntarily.

Limits, Resources, And The Carekeeper Journal

SPEAKER_01: See, this is great information, and that's why people should go in and you should tell them about our Facebook group that we have.

Michael: You can tell them about our Facebook, right?

SPEAKER_01: Oh well, we have an amazing Facebook group that is only a few weeks old and it's already got over a thousand people in it.

SPEAKER_01: I mean, so the word is getting out there.

SPEAKER_01: That's amazing.

SPEAKER_01: And what is the name of our group?

Michael: Well, we have Care Coalition is the is the umbrella, yes, uh, which I see as the movement, if you will.

Michael: It's the it's the coming together of like-minded folks who want to know information like what we just gave them here today, and they want to do something with that information.

Michael: They want to pass it along to other people so other people know and are empowered and and talk from a place of knowledge as opposed to flying off the handle.

Michael: And within the care coalition, we also have a a Facebook group that's called Mental Health Resource Network, where Victoria and I put up videos like this.

Michael: We put up information like we we talked about earlier.

Michael: You know, here's a here's a form for the power of attorney that you could use, and but use it only under certain circumstances.

Michael: And so those are two really important resources that we're putting out there for folks.

Michael: And as you said, in a few short weeks, we've already got a thousand members, over a thousand members, which couldn't make me happier.

SPEAKER_01: I mean, it's just shows the need for this that really does.

SPEAKER_01: And then now we have two additional resources out there.

SPEAKER_01: We have this podcast, and then we have our podcast, and they are doing amazing.

SPEAKER_01: Congratulations to you.

SPEAKER_01: Yours is now like in an amazing chart-topping place with Spotify because everybody's realizing that this is so important and it's necessary.

SPEAKER_01: And don't we have something big rolling out for the end of May next week?

SPEAKER_01: Don't you want to announce that?

Michael: Oh, good point, Victoria.

Michael: Oh, yeah.

SPEAKER_01: Oh, wow, I'm glad this is recording.

Michael: Since we're in May right now, and this is meant to be there this month.

Michael: We do have something rolling out next week, and that is our journal.

Michael: So, whenever you're listening to this, May, June, next year, whatever it may be, we we created the the Carekeeper Journal, which is this amazing tool that I cannot encourage people enough to have.

Michael: Because if you want to give information to those doctors that we talked about, if you want to have them listen to you, walking in with a binder of materials that they can that you can, or a copy of the binder that you have, walking in with it and and having it right there for them to have, if it's not already in their records, they now have it in their hot little hand and they can peruse it really quickly.

Michael: They could see what medications your loved ones, what the frequency is, when when they go to see their their doctor, or when they don't go to see their doctor, their psychiatrist, their counselor.

Michael: You could talk in this journal.

Michael: There's places for you to give history.

Michael: What was the outset of the illness?

Michael: There's a place where you could say what has worked, what hasn't worked.

Michael: And and folks, from my perspective as being a lawyer in big highfalutin consulting meetings, and from Victoria's perspective of being not only a patient herself, but an advocate for her daughter.

Michael: I can tell you that when you hand a doctor a great timeline and full of great information, they think you would think it's Christmas morning.

Michael: They love to have that kind of information at their fingertips and at their disposal from someone who knows.

Michael: And you, family members, know better than anybody else.

SPEAKER_01: Right.

SPEAKER_01: And let me go a step further because I know as a patient, a medical patient, and I know as a caregiver for my daughter as a medical parent and caregiver, and then as an advocate.

SPEAKER_01: So I'm between Mike and I, we have the attorney, we have the advocate, we have the caregiver, we have the patient, the medical patient.

SPEAKER_01: So all of them are checked.

SPEAKER_01: And when you go in there, and I can't tell you how many times as an advocate, I've gone in there and I'm like, here, and I hand it to the family, and I'm like, here, have this.

SPEAKER_01: Because I mean, think about it.

SPEAKER_01: When you bring in somebody in an emergency, the first thing you need to do is uh fill this out.

SPEAKER_01: Well, you already have uh uh filled out.

SPEAKER_01: So, like you have all this pertinent, and whether you're the caregiver, whether you're the parent, whether you're the patient yourself, and you have this binder and you put it in your emergency kit, you put it an extra copy in your car, you give it to your loved one and your emergency contact.

SPEAKER_01: You can give all of your loved ones copies of this.

SPEAKER_01: It can literally save your life.

SPEAKER_01: It literally saves your life.

SPEAKER_01: And I'm not saying this as an attorney because I'm not.

SPEAKER_01: I'm saying this as the parent of a complex child.

SPEAKER_01: I'm saying this as a patient of over 120 surgeries.

SPEAKER_01: I'm saying this as an advocate who has advocated for hundreds and hundreds of families actually in doctor's offices, in the emergency room, in mental health facilities.

SPEAKER_01: And I'm telling you, this packet, what has been created and put together, is the all-to-go-to.

SPEAKER_01: And you can go Google and find.

SPEAKER_01: And here's the difference you can go to Walmart and look at like drawing books, and they have 50 different ones, right?

SPEAKER_01: And it depends what you want.

SPEAKER_01: But inside, you're like, oh, what do they have in it?

SPEAKER_01: This is the one that you need because this is the one that has everything that you're missing.

SPEAKER_01: And when you go in there, especially when you unfortunately, and I hate to say when you're not accustomed to it, because like we're so accustomed to it, we know it's just, you know, we're in our wheelhouse, unfortunately.

SPEAKER_01: But when you go in there and you're on high alert and you're scared and you have your, I call it the roller coaster of emotions, where it's what's going on?

SPEAKER_01: Oh my God, I'm looking at my loved one and I don't know what's happening.

SPEAKER_01: And you forget things, which is normal, it's expected.

SPEAKER_01: And you think, oh my God, I forgot to tell them that they're allergic to amoxicillin.

SPEAKER_01: I forgot to tell them that they they're allergic to sulfur or that they're allergic to tangoderm or you know, whatever it is.

SPEAKER_01: You have all of that right there so that you can focus on your loved one.

SPEAKER_01: You don't have to focus on the ins and outs of this, hand it to them and have a peace of mind.

SPEAKER_01: And it is so important because I've done this for over 20 years.

SPEAKER_01: He's older than me.

SPEAKER_01: So he's done this for 30 years.

SPEAKER_01: And when you can go in, I have to zing you when I can, but when you can have this at your fingertips and say, Hey, here it is.

SPEAKER_01: Here's everything you need.

SPEAKER_01: And yes, there's stuff out there that says here's my merch.

SPEAKER_01: Contact, here's all this, but nothing compiled like this that has things you can't even think about needing, but they're already here for you.

SPEAKER_01: This is the binder that you have to go get.

SPEAKER_01: We're putting it out next week.

SPEAKER_01: By the time this comes out, we're talking about end of May of 26th.

SPEAKER_01: In case you hear this in a year, this is what you need.

SPEAKER_01: This is the bottom line.

SPEAKER_01: Drop the mic, save the day.

SPEAKER_01: Journal.

Michael: I would let you drop the mic, except that I also want to impress upon people that there's a lot of tools in there that are geared toward you, family member, as the caregiver, to make sure that you're taking care of yourself.

Michael: So we have we have guided walkthroughs, daily, weekly, monthly guided things, whatever you're comfortable with.

Michael: This this thing's your own.

Michael: You make it your own.

Michael: But so anyway, the journal's coming out and officially being launched.

Michael: In fact, I got to go up to the printer today.

SPEAKER_01: So all exciting news.

Michael: So thank you all for being here.

Michael: Thank you for holding it together, kinda.

Michael: And thank you to Victoria Cure for joining me today so I didn't have to talk to myself.

SPEAKER_01: This is what it takes.

Michael: This is what it takes.

SPEAKER_01: This is what it takes.

SPEAKER_01: Thanks everybody.

Caregiver Misconceptions with ("Host") Victoria Cuore

Tonight's Episode

Welcome And Why This Matters

Misdiagnosis And Medication Reality

Crisis Care: Baseline Advocacy

HIPAA: Listening Versus Disclosing

The Two-Line HIPAA Script

Lawyers Serve Clients, Not Families

Talk Capabilities Before Limitations

Guardianship And Conservatorship Explained

Revoking Orders And Regular Reviews

Limits, Resources, And The Carekeeper Journal

Chapters

Tonight's Episode

Welcome And Why This Matters

Misdiagnosis And Medication Reality

Crisis Care: Baseline Advocacy

HIPAA: Listening Versus Disclosing

The Two-Line HIPAA Script

Lawyers Serve Clients, Not Families

Talk Capabilities Before Limitations

Guardianship And Conservatorship Explained

Revoking Orders And Regular Reviews

Limits, Resources, And The Carekeeper Journal

Chapters

Before You Go...