Being manipulated by the legal system

Hello everybody, thank you for being here with us today. This is the Truth, Lies and Alzheimer's show brought to you by Global Media Network LLC and Passionate World Talk Radio. Passionate World Talk Radio is a wholly owned subsidiary of Global Media Network LLC. Our motto is educate, enlighten, and entertain. And I am your host, Lisa Skinner. Today I have a very special guest with us, and we are going to basically talk about the cost of aging parents. I don't know if you all know this, but April is Financial Literacy Month. And the company Fidelity Insurance estimates that it costs a healthy senior couple more than $300,000 just for their healthcare during retirement. If one of them becomes seriously ill, the costs mushroom, and Medicare does not cover everything. Here today with us is Lainie Rosenstiel, and she says it's a good time to ask yourself a few key questions. Do your parents have that amount in total assets, let alone in a dedicated account? Do you even know if they do? Now, she was originally a classical violinist, and she earned a master's degree in public health after her mother who was a retired professor developed dementia. She was put into a conservatorship and their story ended with dire results. She then founded what's called DaySpring Resources. So Leonie now educates families about the real cost of taking care of aging parents. And how to withstand what can be a very difficult journey. She offers a realistic look at where the money goes and the various reasons why even adult children who believe they are in line for an inheritance may be in for a shock. She says that's why she made a vow to her mother that she would put their story into a book. And that's exactly what she did. The book is called Protecting Mama: Surviving the Legal Guardianship Swamp by Calumet Editions. It's a casebook showing exactly how various people manipulated her mother and herself and how she began to develop counter strategies. So today she's here with us to tell us what her counter-strategies were and this whole nightmare that she and her mother went through. So I want to shout out a big warm welcome for my special guest today, Lainie Rosensteel. Lainie, thank you for being here. It's such a pleasure and an honor to have you on the show., and we can't wait to hear your story. So why don't you go ahead and start sharing that with us?

Okay, well, thank you so much, Lisa Skinner Skinner Skinner. I'm honored to be here and to try to help other people understand what a huge, huge cost it is to all of us the way the system currently is broken. Right now we have what's basically an adversarial legal system, which means there's a person who acts as a protagonist and somebody who acts against them as an antagonist, and they're generally called the plaintiff and the respondent or various other names.

Sounds like a Shakespeare play.

It basically is.

What happened to you? I mean, it sounds like you had a horrendous experience after your mother developed dementia, trying to get her, um, basically all of her, uh, life, important life things in order.

Well, I had been her power of attorney for years. My father died, and for about 9 years I took care of her investments and her general needs. She didn't need guardianship at that point. She just was never particularly interested in finance, and my father was. My father taught me because he knew I would need to know it in order to help my mother if anything happened to him. So he taught me, and her financial acumen primarily consisted interested in saying yes, dear, when he asked her did she want to have a part of something he was investing in. And that is, you know, she was a college professor. She had a great interest in anthropology. That was her specialty. And it was not finance that was her specialty. So—

So let me ask you, did you have a living trust already set up when your mother was diagnosed with her dementia?

The reason why there was not one, a living trust, was that many years ago my father was the guardian and conservator. He had a degree, a certificate at that point from the American Institute of Banking. So he was very well versed in investments. And I had an elderly maiden aunt who fell and broke her hip. And we went and saw her in the hospital, and she decided she wanted to give my father power of attorney, and she did. And she never woke up from the hip surgery. They had an unqualified anesthetist who operated, who was in the operation, and he overdosed her on anesthesia. And she—

oh, I'm so sorry—

was never able to walk again or talk again. Or move again without help. And so my husband became her guardian, but he became her guardian with great difficulty because we were then living in the state of New York, and our, um, the attorney that he managed to find— nobody wanted to help us because she was elderly, and they said she's an old woman and she's not worth anything. That was literally one of the attorneys said, "She's an old woman. She has no children. She has no husband. She's worthless in the eyes of the law." That's an exact quote from him.

Oh my gosh.

It's in my current book, which is the one that's after Protecting Mama. And that was the attitude of the law. And so He said to my father, "You will have to pay extra if you want to become her guardian because otherwise the judge is going to appoint the friend that he always appoints," which kind of suggests that there might have been some cronyism involved there.

Uh-huh.

Yeah. And that's one of the problems that still exists in the guardianship industry, and it is an industry. There's $60 billion that comes available to people who are unscrupulous every year when people turn 65 or older and become incapacitated. And there's even more money involved in people who have less money because they have entitlements from the government that run sometimes $10,000 a month or more. In money that comes in from the federal government or the state government. So there's a certain amount of— what shall I say— motivation on the part of people even in state agencies because they're getting paid for productivity as well. Even if you have an elder who has no money,, they still may have federal or state entitlements that other—

So you're talking about Social Security, right?

I'm talking about Social Security or disability payments or Medicare.

Ah, okay.

Sometimes there's Medicare fraud involved.

Right, okay.

So there's much more money involved in the larger number of people who do not have amassed, uh, amassed savings. So there are two parts of the problem. One of them is kind of the bottom of the iceberg. The top of the iceberg is people like Britney Spears. You can see them. Then there's the middle where you can't really get a good handle on it because everything's so secret. And part of it is is HIPAA, which is supposed to be an attempt to protect people against having private information exposed to public view. But what it has ended up doing is making all of the questions about people's ability to function mentally secret.

And I'm sorry. So you're saying that all of what you're telling us right now, you were put in a position that you had to learn from the school of hard knocks and— because nobody provided you with this information and you went through this horrific experience to learn everything that you're sharing with us today. Is that a safe—

Yeah, it took me 14 years coming through this particular swamp, which is why I call it a swamp. There are people who will tell you— I had someone who told me she was my attorney, and then I found out she was being paid by the guardian. And I found out when I got the first report from the guardian. And I looked at it and there were inaccuracies in it. And they were major ones. Like my mother remembers the people she sees frequently— well, the relatives she sees frequently. Other than me, the only other relatives were in states on the East Coast. And they weren't living anywhere near us in New Mexico. They were not seeing her frequently. They couldn't be.

So it sounds like she was representing herself to you as your fiduciary, looking after yours and your mother's best interest, but that wasn't the case at all, right?

She said she was, she was my attorney. Somebody else was the attorney for the guardian. So when I got this first report, I looked at it and I saw all kinds of inaccuracies, and I said to her, I need to protest that there are inaccuracies in this report. She said, you can't. I said, why am I not able to? She said, because I already signed off on it.

Oh my goodness.

I said, how could you do that? She said, well, I'm also representing your mother and I signed off on her behalf. I said, how can you be representing both of us? Isn't that a conflict of interest? At which point, of course at which point we parted ways, but she had already signed up on it as my attorney. And then I had to go looking for another attorney. So it's like feeling, feeling that you're doubly orphaned. And the only reason that I was not fighting harder for my mother was that my husband was dying at that point. He had Parkinson's. He had advanced Parkinson's, and he had the dementia that comes with advanced Parkinson's. So I had a mother with dementia and a husband with dementia at the same time. It was really— I do not recommend this to anyone, this situation. It is awful, and it robs you of sleep, robs you of peace of mind. Never mind the money. The money is secondary, but the personal dislocation that comes with this is not to be believed, and you certainly do not want to go through it if you can avoid it. But the problem was both of them were going through manic stages at that point, which means they were agitated, they were easily upset, they were easily angered, and I could not put them both in the same house because I didn't know what would happen. My, my husband refused refused to have anybody come into the house to try to help me take care of him. And my mother had a, um, an aide that I had hired for her who was quite a busybody. My husband would never have tolerated that in the same house. My mother needed an aide. My husband really needed an aide too, but he just denied it. And so I was sitting there in the middle of problem saying, well, I need to take care of my husband and he won't allow anyone else in the house. My mother has an aide. And so that became a serious issue because they then isolated her. And after the court-appointed guardian took over, they isolated her. I didn't see her for almost 3 years. They did.

Where did they isolate her? What— where was she?

In her own home.

Okay.

She had a private home and she had an aide, and they isolated her there. You can be—

so they didn't allow you to visit her?

No, not for almost— wow. It was only after my husband passed on that I had my attorney say to them, look, you're keeping her from her only close relative. Why don't you let her visit? Which was something that I had asked for before, and they said no, no, no, no, no, that's not, not right. And I had an attorney later, a different attorney, tell me that at that time the theory was that they needed to try to get the ward to bond with the guardian, and they very often did that by isolating isolating the ward. And there's still— a lot of people are still doing it. They isolate the ward and try to get the ward to feel warmly towards the guardian, right? If that means that they have to say bad things or keep them isolated from family, then that's what they do, right? Okay, so it's—

yeah, this is not the first time I've heard this, so It's very consistent with some of my other clients' experiences who went through a similar situation. So, yeah, go ahead and continue, Leonie.

Yeah, there is a kind of a game plan, and some of the survivors of this experience call it isolate, medicate, rob the estate, if there is an estate. My mother was the last person in the world you would want to try to medicate. If anything, she would have a cup of herb tea. She was not someone to take medication, and when they tried to give it to her, she very often refused it. So they couldn't medicate her, but they could isolate her because it was hard for her to get around. She was over 90 at the time, and she couldn't drive. She had lost her— she was angry with me because she had lost her license. This is something that happens in dementia all the time. Oh yeah, my fault that she lost her license. If I had been at the exam, she wouldn't have lost her license. Well, she couldn't concentrate well enough to read the eye chart, and there was no way I could have fixed that whether I was standing right next to to her or across the room. It wouldn't have mattered. But she was not able to understand that. And so, "Oh, it's your fault that I don't have my license anymore, so now I can't get around the way I used to, and it's all your fault." No, it's not. But there's nothing you can do sometimes to explain to people that at a certain stage of the illness, They're always blaming other people for things. I used to know an attorney who said there were certain members of his practice who came in every 3 weeks and changed their will because they got mad at somebody in their family, and it was always a different person. So they would always write that person out of the will and write another person into the will, and they were doing this like 5 or 6 times a year, and it was crazy. But that is probably a symptom of the problem. The problem being dementia and the person's inability to distinguish between reality and fantasy. And very often that happens, and I have a friend, she's a social worker, and she wanted to be become the guardian for her father, and at his competency hearing he said he wouldn't trust her to be his guardian because they had had an argument. And I said to her, did you ever have an argument with him? She said, yes, when I was 18. But unfortunately, people who don't remember cannot distinguish whether something happened yesterday yesterday or 10 years ago or 20 years ago. It all runs together and they cannot distinguish the difference.

And since— Yeah, this is true. We, we've talked about this in detail on other episodes of my show, but my— you kind of caught my curiosity because once somebody has had a diagnosis of Alzheimer's disease or one of the other brain diseases that causes dementia, and have been deemed of no longer being of sound mind, how is it that they could go to their attorney 5 or 6 times a year and continue to change their will if they're considered cognitively incapacitated?

Oh no, I'm talking about people who are exhibiting symptoms. That particular man was exhibiting symptoms but had never been been officially diagnosed or considered.

Okay, that makes a little bit more sense.

Yeah, like that. Now theoretically, once someone has that, they can't, but—

right, right.

If people are not, um, honorable— I'll put it politely— if they're not honorable, sometimes they rush to get people to do things before the final court decision. And that happened with my mother. I had the power of attorney. I had had it for years, and I've been taking care of her affairs. And about a week before the hearing in the court, uh, my attorney— the person who said she was my attorney at the time— and the guardian, the person who became the guardian that the judge appointed, went to a third attorney and had my mother revoke the power of attorney she had given me years earlier. She was already not competent to make any decisions, but she made that decision. And because of my attorney's dual representation, representation at the hearing. She was actually— she thought she was representing my mother, but she told the judge she was representing me. She did not object to the fact that after all of the medical evaluations had been conducted, my mother had revoked the power of attorney. My mother did not realize, because she told me later, she had no clue that This meant that she was going to be put under the power of someone the judge appointed. She believed that— they had told her apparently that if she would just revoke this power of attorney, then the whole question about her competency would go away and she would leave the court free and able to make all her own decisions. And maybe she would get somebody in to help her. Now, the person she got in to help her was the person the court appointed as her guardian. And that wasn't help, that was control.

So once you kind of figured out how to get through this maze that you were put into, And it doesn't sound like you had any cheese to follow through the maze. How did things turn out? And you'd mentioned that it took 14 years to sort it out. So kind of press fast forward here and tell us how things ended up working out. Hopefully it was in your favor. And you got everything sorted out after this horrific experience going through it.

It was 5 years after Mama passed away that I got my own freedom back because a judge had imposed a gag order on me that said you may not mention your mother, you may not talk about your mother, you may not write about your mother or publish anything about your mother or your family. Forever. And that is really intolerable control. My mother had passed away in 2012. Here we were, uh, in 2017, and I had this gag order on me. And I had promised my mother that I would, uh, write the book, but I couldn't write the book. And I had a new attorney, obviously, and we had made application to have the gag order lifted. Judge refused, um, and eventually the Albuquerque Journal got involved and came in with what they call an amicus brief to ask the judge to lift the gag order so they could look at the records because all the records in most states are kept absolutely secret. Very often they won't give them to family. They often won't give them to the press. A few recently have given some records to the press, but everything is secret as to the name of the person because they want to keep that secret. Even though the person may have passed away, they still do not divulge it. This is a horrible thing, I think, because it creates the idea that mental illness or mental disability, mental challenges, are to be kept secret. And the more that they're kept secret, the more people can distance themselves from that population of people. They're over there, they're hidden. And the more that you keep people hidden, the less they get help. They do not get the help they need when they're kept secret. It's like those 19th century novels where the crazy old aunt is, is locked up in the attic. Yeah, we shouldn't be doing that to people. They need to participate in society, and they will decline more rapidly if they're isolated. We all do.

That is absolutely true. We know that. We saw it during the COVID pandemic. It was the number one cause of death for people with Alzheimer's disease and related dementia was due to isolation.

And the secrecy surrounding guardianship, mental challenges. This is the worst part of it, that their populations are locked up. It's like we don't want to see them, we don't want to know they're there, but they are there and they are part of our lives. Absolutely. Keeping them isolated is bad for them, it's also bad for us. Yes, putting a wall up and saying, I don't believe, I don't believe in gravity. Well, you don't have to believe in gravity, but if there's something heavy above your head and it's about to fall on you, when it falls on you, you better believe in gravity. I, I don't understand a lot of people's denial. And there is denial. There was denial in my family. I had a cousin who said, "No, no, no, we have nobody in our family who has dementia. We can't. She's too smart." My mother was very bright. She was a very intelligent woman, and she'd written a lot of things, and she'd done a lot of things, and she'd traveled a lot. She knew a lot of people. But that doesn't— nothing protects you. The problem is It makes people feel vulnerable when they realize that you can't make sure that it doesn't happen to you by denying that it happened to somebody else. It's not going to protect you. It's magical thinking and it doesn't work.

Yeah, none of us are protected from— I mean, We all have certain risk factors that apply to us that could increase our chances of developing it, but as you said, Lainie, there is nothing that we can do to protect ourselves 100% from developing a brain disease that causes dementia. It's just the way things are. And there are things that we can do to try to lower our risk But yeah, it does not discriminate anybody to getting this disease, which is sad. I think I mentioned to you in our earlier phone call, I have actually had 8 family members suffer from one of the brain diseases that causes dementia, and 5 of those were blood relatives. So, it obviously runs in my family, but that's the It still doesn't mean that I'm going to get it. My risk is higher, but it might just hit me, and that's what I pray for every single day. So, you know, what you're telling us is almost an unbelievable story that you actually experienced this in this century.

Yes.

I know, and it's just, you know, it's, it's like I said, it's almost unbelievable that you were put through this. So I, I need to ask you, what is your advice to our listeners now that you can look back and kind of analyze the whole situation? And it took so long to get everything straightened out. What is your number one piece of advice for other people that are going to be either— that are either facing the situation, in the midst of the situation, or will face the situation? What's the one thing that they can do to avoid having this happen to them?

I would say do not keep secrets. Within the family. My family was filled with all manner of secrets— secrets about religion, secrets about what people had done in the past, uh, you name it. And there was a lot of emotional blackmail that was being exerted by other members of the family over my mother and over what people thought they might be entitled to. I'll give you a for instance. My father and my uncle, that would be my mother's brother-in-law, made an agreement when I was 10. And my father told me about it, that whatever was in one side of the family would remain in that side of the family and that there would be no legacy given from my father to my cousins or from my uncle to me, which was fine with me. I didn't care. Apparently my younger cousin didn't get the message and she was agitating to become my mother's sole heir. For reasons I don't know, because she had a sister and the sister did not. I assume that her father had told her, but my younger cousin had got this crazy idea and she kept telling everybody that she should be my mother's heir. My mother kicked her out of the, out of the house, but my mother— the person who became my mother's guardian did not know about this. This, and I didn't even think to tell her about it. It came out at my deposition later that my mother had refused to do that. But she caused a great deal of trouble for me with this court-appointed person because of her insistence that she was very close to my mother, which was not true. She saw her a couple of times a year and had not seen her for 4 years while her mental abilities were declining. So she was in a total state of denial about the problem, and it caused a lot of grief for me and probably a lot of grief for her because she was believing all these things that were coming from her imagination and had no grounding in reality whatsoever. So if, if you're going to make a decision like that, everybody needs to be in on it. I have a friend who tells me, and this came out in the conversation that we had the other day, that her mother, when she was starting to decline mentally, had promised same family heirlooms to each of her siblings and to her. And fortunately, they were able to communicate well enough to understand that this was not going to happen because it was only one set of heirlooms. So they came to an amicable agreement, but some families might not.

Well, I think what I hear you saying is And why it's even more important to address these things and become proactive, especially, especially when you're dealing with a dementia-related illness, instead of being reactive and waiting for another person to have to go through the experience that Leonie is sharing with us today. We need to have these conversations with our loved ones before they develop Alzheimer's disease. It's so important for us to understand what their wants, needs, and wishes are and not leave it to us to try to figure out when they're no longer able to communicate those wishes to us. Would you say that the best way to handle that for us all legally, kind of in hindsight, for you, is to draw up a living trust while our parents are still of sound mind?

Well, see, the problem with— I, I have had this discussion with numerous attorneys, and one of the things that a trust is. If it's a living trust and it's revocable, is the same thing can happen with that as happens with the guy I was telling you about who kept changing his will every few weeks?

Okay, so you're— so then are you saying that it needs to be an irrevocable trust? But we need to have a trust.

I'll tell you a secret about irrevocable trust. There was a time when they opened up what they call the court docket in New Mexico. For a while they became open to public inspection for guardianships. And you would be surprised at the number of hearings that had the heading, revoking John Smith's irrevocable trust. An irrevocable trust is not irrevocable. It can be revoked under certain circumstances. And so unless there's really, really good communication in the family and everybody's on board for what's going on, there can still be problems. The reasons why an irrevocable trust can be revoked include the fact that it— this is not legal advice, by the way, because I'm not an attorney. I'm just parroting things I have heard from attorneys. An irrevocable trust is the money or the possessions of the person, and no one benefits from the trust unless there is something left over after the person passes on. If that person needs the proceeds, needs the money in the trust to take care of them, they dissolve the trust. It's just really simple.

Okay, so I think our listeners would really appreciate us letting them know if they do have these conversations with their parents and they do identify what their wishes are, and this is prior to any symptoms or diagnosis of dementia-related illness. What is the best way or the recommended way to protect our parents' wishes of how they want things to be managed for the rest of their lives, especially if they become cognitively incapacitated? How do we protect our parents' wishes legally?

With a good attorney. Right now there is a movement that is trying to create something in between guardianship and freedom., and they call it assisted decision-making. I have had nothing but bad reports about it, and I had a bad experience with it. I'll go back and explain that. When my mother was alive and I was being— I was able once again to see her, they invited me to join her when she She was going to a doctor's appointment. And while we were sitting in the waiting room, a functionary from the guardianship agency came in, and out of her purse she took a magazine. And she gave it to my mother, opened it to a spread, to a photo spread on two of the pages. I was sitting next to Mama, and she said to Mama, which of these do you like? And the pictures in the magazine were of landscaping. And my mother pointed to a picture and she said, I like that one. And the gal from the guardianship agency said, oh, you can't possibly like that one. That one's ugly. You like this one. And it was a totally different design. And that was the one that my mother got. Well, the difference between the one design and the other design, one was very simple and the other one had plants all over each other. It was just crammed with plants. And it turned out that the difference financially was between $5,000 and $70,000. Now, that's not an inconsiderable difference. They like the more elaborate one. It cost more, but that wasn't the one my mother liked. And then I was told later by the head of the agency that, gee, you know, she picked it herself. No, she didn't. That was assisted by the other person from the agency who told her, no, no, no, you don't like the one you like. You like the one we like. And so that was my experience with with assisted decision-making. I have a friend who's a social worker counselor, and she's had experience with the process, and she says normally when someone is really incapacitated, there's a care team, and she would be representing the person, and the other people would be representing the other interest. Well, there are at least 2 or 3 of the people representing the other interest, and there's only one of her. And so no matter what it is, if they disagreed with her, she would be outvoted, which meant that the persons themselves would always be outvoted.

Yeah. So unfortunately, we are running out of time here today. This has been quite an eye-opening story, Lainie, that you have shared with us. And this is why I always say, because this has been another perfect example of the so many aspects of living with dementia that are unexpected and can surface out of nowhere at any time. As you all know, this is what I call the hidden or secret faces of Alzheimer's disease. And I've said before, they show up unannounced and are completely unpredictable. And that's why it's so important for all of us to be prepared for anything that emerges on this journey. And that comes through knowledge. Knowledge is power. So, Lainey, thank you so Thank you so much for sharing your extraordinary story with us today. How can people find you, your organization, and your books?

Well, they can find me at dayspringresources.com, and my book is called Protecting Mama, and I'm working on two other books explaining how this happens and how people people can have checklists of what to do before it happens. Exactly what you were saying. Oh, perfect. Exactly what you were saying, Lisa.

They need— Yeah. Well, as I mentioned to you, Lainey, I've been doing this professionally for over 30 years, and I just can't emphasize to our listeners enough to be proactive. Don't be reactive. Because this— there's so many unexpected things that come at you on this journey. You and I talked about it prior to us going live here that it's a long, long course to be on. I have mentioned before the average The average time a person lives with Alzheimer's disease or related dementia is between 8 and 15 years. My grandmother suffered with it for 20 years. That's a long time for families to be impacted right along with their loved ones throughout this disease. And these are just some of the things that we talked about today with Lainie. That we probably never would have thought would challenge us, but they do. She is here to attest to that, and all we want to do is help you avoid these kind of situations by providing you with the knowledge that you need to know to avoid these things. Do you have anything else to share with our listeners regarding your experience? Experience, Lainie?

Well, there's so much more that I could say, but there probably isn't time this time around. I do bless them and wish them well on their journeys, and I hope that we will find a cure or a prevention, but until we do, we need to act as families and understand each other and work together.

Absolutely. I agree with that just 1,000%. Thanks again for being here. This has been a true pleasure. You provided us with some really important and valuable information today, and I want to say thank you to our listeners for being here on the Truth, Life Alzheimer's Show. This program can be found on our website site at passionateworldtalkradio.com. Go to the shows tab and on YouTube at PWTR, or you can search for us on YouTube. You can also find me on Facebook by searching for Lisa Skinner Author, and you can find my books and training programs on my website truthliesalzheimers.com. Leone and I wish you all to have a great rest of your day. Thank you for taking your time out of your day to listen to us, and I hope that this information has been really valuable for you. We'll talk to you next week. Thanks again.