Approach to Elder Law with Fay Blix

In this episode, Steve and Virginia speak with elder law attorney Fay Blix about the critical importance of early legal planning after an Alzheimer’s diagnosis. Fay explains how stigma, fear, and denial often delay planning, and emphasizes involving the diagnosed person in decisions while they still have capacity. She outlines key tools such as durable powers of attorney, advance healthcare directives, and POLST forms, stressing that documents should be clear, personalized, and regularly updated. Fay also discusses the emotional and logistical challenges families face, the value of open communication and defined roles, and why conservatorship, though sometimes necessary, can be costly and intrusive. Her core message: proactive legal planning helps protect dignity, reduce stress for caregivers, and ensure a person’s wishes are honored as the disease progresses.

Transcript

Steve: 0:06

From the University of California Irvine, this is UCI MIND's Spotlight on Care, the podcast where we share stories, experiences, tips and advice on caring for loved ones affected by Alzheimer's and other dementias. Hello everybody, and welcome to another episode of Spotlight on Care. With me today is always fabulous, Virginia Naeve as well as somebody who's a very exciting expert on elder law. Her name is Fay Blix. She's sitting across from me. Got a great smile by the way. She's devoted her practice for many, many years. In fact, her resume just sings about all the things that she's done in this space. But she kind of focuses on Elder Law and also those living with disabilities. I ran into a friend who actually had a daughter with a disability, and Fay did some great work for her. You know a lot of people. She's one of the first attorneys in the nation to be certified as an elder law specialist. She's also accredited- and I think this is important in today's world-with the Veterans Administration, she's an agent for the VA and she's also the founding chair of Orange County's Elder Law Section of the Bar Association. And on a little broader scale, she's served on the government's Planning Task Force for a plan on Alzheimer's. I think one of the things that's interesting about her is her approach to elder law. It's to be aware of her clients Alzheimer's capacity and the progression that's occurring, and it's a part of the way she addresses her law. It's not just forms and putting together plans. It's understanding what's going on with the person, which I just think is so important, and also kind of being sympathetic to caregivers. This is something she understands, the value of what a caregiver represents. Virginia, do you want to share about this whole area of elder law before we start in with Fay?

Virginia: 1:54

Well, I'm so happy that you're here with us today. Thank you for coming. I'm hoping to learn a lot, and I will bring it up in our conversation, but I heard something the other day that just didn't sound right about planning when you have somebody in the family with dementia. So I'll bring that question up a little bit later, but welcome.

Fay: 2:14

Thank you.

Steve: 2:15

So in our conversations, you spoke about helping families who are doing this legal planning, how to avoid embarrassment, which I thought was a really interesting concept for an attorney to talk about. So what are some of the examples, or what's the issue that you see when it comes to being embarrassed about?

Fay: 2:32

One of the tragedies of Alzheimer's disease is that there's a stigma attached to it, and so it often is difficult for people to seek help. Sometimes the caregiver is embarrassed about some of the memory lapses or the behavior of the spouse or the parent, and it always makes me feel sad, because if it were a cancer diagnosis, that would be addressed right up front and we would work through it. So it's always important to me to make sure that people feel safe within the legal consult. And it's also important that the person who has been diagnosed with dementia is part of the process. So often, I think they're treated like potted plants, and then everything else just circles around them. And you know when you think about it, most people have never been to an attorney before. They've lived very upright lives. They've not been involved with lawsuits or criminality. And so coming to an attorney is scary under any circumstance. And then now we're coming because we have a diagnosis. And you can just imagine what's going through everybody's mind. What am I going to do? What does my future hold? Is my wife going to be okay? What about the kids? Is my family going to be embarrassed? Am I going to be a burden to me? Am I going to have to stop driving? I mean, all of these things, swimming around, and I don't know of any other diagnosis that really triggers legal planning as a suggestion as quickly. Everybody gets along to it, we're all going to die sometime. But with Alzheimer's disease, because of the fact that one has to have capacity in order to do the documents, people are recommended to start legal planning sooner than in some other time, so they already feel like I'm the designated sickie here, and I have to be dealing with all of these kinds of issues.

Steve: 4:35

Let me ask you a follow up question. You've obviously dealt with lots of clients, but there are some people who don't want to even go and make this step. How have you helped people understand the importance of it, if you were talking to a patient or a caregiver, to overcome the idea that you need to do this?

Fay: 4:51

Sure, denial is very prevalent among all of us, but I think particularly in getting this diagnosis, it's very hard to face, and like most of us, we hang on to the control that we have. And somehow legal planning has been presented as giving up control, and I like to present it as taking control. I don't know about you, but I'm more afraid of incapacity than I am of dying. So I want to be sure that someone I love and trust is going to be in charge, and I'm able to give instructions while I still can, as opposed to just leaving it to chance. Sometimes families, because they're nervous, will say to mom or dad,"We've got to get in there to get a power of attorney over you. You're losing it." And, you know, normal people dig in their heels. So I like to reframe the discussion. And I suppose you can say it's just semantics, but I don't think it is, because I want the person who has just been diagnosed to be as involved in the discussion. There's a saying in the disability community, "Nothing about me without me," and I think that's somewhat true, at least in the initial stages of the disease, people should be part of the process of the planning and to be able to talk to them about what worries you most about your diagnosis. What makes you afraid? Why do you feel embarrassed about the diagnosis? Those kinds of things, and then get them talking about if you couldn't make decisions on your own, who would you trust?

Steve: 6:31

This sounds like a great conversation that you would have with someone with the disease. Rather than making them feel uncomfortable, you're going to actually make them feel more comfortable. That's great.

Fay: 6:40

But also for the caregivers or the care partners, this kind of planning is not just for people with Alzheimer's disease. We should all be doing this once we're over the age of 18. I mean, it's just that with the disease, we probably should do it a little sooner because of the capacity issues, but I strongly recommend that the care partner is involved. They do their own legal planning as well, because, as we all know, the statistics, often the caregiver has significant illness or sometimes dies before the person with the illness. So we want to be sure that everybody feels safe and everybody feels like their issues are addressed because part of the planning is trying to make it as smooth and simple for the caregiver as well. And almost all of my people who have the illness, one of the major things on their heart is to make sure that their spouse or their family is going to be okay. Now, there are some people with control issues. I get it, you're never going to get them in the office, and then we have to plan around that. But for the most part, it's a reframing I think.

Virginia: 7:47

It seems to me that you're also saying, the earlier the better.

Fay: 7:52

No question. You know the old proverb, dig a well before you're thirsty.

Virginia: 7:56

I like that.

Fay: 7:57

Yeah, but it is tough, because you're just getting over getting the diagnosis, you're going through all these tests, and then somebody says you need to see an attorney, and you're scared of attorneys and the law. So it is hard.

Steve: 8:11

Maybe a broad question. You've been in this field for Elder Law for many, many years. What major changes have you seen in the last 10 years? Is it still the same, or have some new things occurred?

Fay: 8:22

Well, I think it's become more known as a specialty. When I first started, no one had even heard of it. Now it's becoming more well known. And for a period of time, it was almost a sexy specialty to be in, until sometimes attorneys got into it and realized, "Ooh, this involves some learning curves in terms of public benefits." And not everybody likes to deal with families and people and all of that. So I think, from that perspective, elder law has grown. The other thing I think that has changed, though, is the public benefit planning. Because, as you know, the illness is a very expensive illness, and as a result, we sometimes have to rely on government programs to see families through. And that whole area is a changing landscape. I mean, I feel like I practice in quicksand sometimes. So from that perspective, I think that is ever changing. But in addition to that, I think there is less of a focus on conservatorship as an option, and more of a focus on trying to do planning early, and even if planning has not been done as early as it should have been, are there ways in which we can support the person with the capacity still remaining without having to go a drastic legal route?

Steve: 9:45

Let's touch on that, because I think that comes up, least we've heard it several times, "Gee, we're way past the beginning. We're way past MCI. I'm worried that it's too late, or I think it's too late." How do you work around this? Instead of early, it's maybe too late?

Fay: 10:01

Right. And one of the reasons I really started getting into this is people did come to me too late, and sometimes conservatorship was our only route to go. But I would first of all suggest to people, don't give up, don't just automatically assume that it's too late, because remember, capacity is not a red line. It's capacity to do what. And there are many things that a person still has strengths that we can work around. The other thing that I want to be able to do is, if it's become too late, there's no powers of attorney, the person can no longer really function in any meaningful way in terms of decision making, I kind of like to work with the family of saying, "Okay, we don't have these tools available to us. But is there a way we can work with what you have without having to go the legal route?" I mean, if we have to do conservatorship, we do. But for instance, try to figure out where is the major bleed, where would hemorrhage occur if we didn't do anything. Sometimes people have joint accounts, so the other person can sign, maybe they can move some of the money if they're worried about elder abuse. Online access sometimes can be helpful, getting your payments on automatic so that it doesn't require a signature every time you have to pay the water bill. Kind of thinking through all of the things. What can I do without this person here, and occasionally that can see us through for quite some time.

Steve: 11:46

That sounds great. I'm going to run through a couple other questions, but maybe we'll come back to this issue of conservatorship. It's not part of what we were going to talk about, but it seems to me, it's an issue that's out there, and people don't really understand the pros and cons of it and how difficult or easy it is. So let's come back and touch on that. You kind of talked about this in terms of being late. Is there anything else that you would say would be a priority of the things that they need to worry about? Is power of attorney more important than other types of things? What would you say the key items might be?

Fay: 12:16

Well, I think one of the hallmarks about elder law is, although we do regular estate planning, we really focus more on planning while you're alive, planning for incapacity. And if you strip away all the legalese with legal planning, all you're really doing is appointing a substitute decision maker, somebody who can stand into your shoes to make decisions for you and giving them guidelines. You probably should look at two

areas: 12:45

one, substitute decision making for financial decisions and substitute decision making for health care. Probably the most important document is the durable power of attorney, and what we mean by that is a regular power of attorney is something I might give to you if I were going to be traveling in Switzerland and I wasn't here to close escrow before the days of DocuSign. My power of attorney could sign on my behalf, but if I became incapacitated, that general power of attorney stops so it needs to be durable, which means it endures incapacity. It remains effective even if I'm incapacitated. And if you have that document, and it's fairly comprehensive, that document then allows the caregiver, or whoever is appointed as the agent under the power of attorney to be able to make some of the moves that the individual couldn't make. Now, there's no question that if we can do the whole plan, the power of attorney is really part of it, but what I'm getting at is focusing on quality of life while we're alive. Certainly we want to plan after death. Nobody wants probate. But as I tell my clients, probate is not going to hurt you. You're going to be dead. What is your quality of life here? So that would be the first thing I would focus on. But honestly, if somebody is coming in to do planning, we want to talk about the whole package.

Steve: 14:17

What are some of the biggest challenges in dealing with family members? In the support groups that I was involved in, not every time, but many times, especially if there was a second marriage, there was this issue about many children or even siblings that were a part, and they come out of the woodwork. What do you talk about in that process?

Fay: 14:40

Yeah, family dynamics are very fascinating, and there's often a black sheep come running in on a white horse right at the end. But I think the key is kind of addressing the issue up front. Communication is vital, and the importance of transparency, and I don't know of any caregiver child that gets the full benefit of appreciation from siblings.

Virginia: 15:06

I was lucky.

Fay: 15:07

Okay, good.

Virginia: 15:08

I was lucky. But I have to say that I have a friend whose siblings excluded her 100%. They made moves with the mom. This friend of mine never- I mean, she got wind of it after it happened, things like that.

Fay: 15:23

And that's very hurtful. And there's a lot of mom loved you best stuff. The child who lives with the parents has pretty major responsibilities, but also has the ability to kind of drink from the trough a little more than maybe some of the other kids. That's where I think, if it's possible, and I realize I'm an ivory tower person, but if it's possible to have a family meeting, so that everybody is in the same room at the same time and hears the same words, they won't hear the same words, but the attempt is there to hear the same words and for somebody to be able to understand and explain the diagnosis, because we have a lot of kids who are in denial. "You know, when I met with Dad last week and played golf with him, he was just like- I don't know what you guys are talking about." And so sometimes talking through the concerns, and maybe assigning job descriptions like a kid who lives on the East Coast can't do day to day caregiving, but maybe they can make some calls and do some research, write a check those kinds of things. And I think if everybody could get a weekly email kind of updating, this is what's happened. I do think that communication is key. And there's, again, the old saying,"What people are up on they're not down on."

Steve: 16:50

I couldn't agree with you more. I had a daughter who was living in Washington, DC, and a son in Cincinnati, and a son here, and it was like, "How do I keep them informed?" So it was not weekly phone calls, but every other week, maybe. And it was definitely an email, especially if there was a doctor visit or anything, almost over communicating, because then they didn't feel lost, and they felt that part of the decision. So when decisions came down that had to be made, I tried to even include them about it. Some people think it's, well, "I'm the caregiver and I'm making this decision, or I've been designated." I'm not sure that that really works in the long term, in terms of the relationship you're building. So anyway, I'm just adding to your thought.

Fay: 17:27

Yeah, and I think you're absolutely right. And I think there's nothing worse than people feeling shut out, you know, of them feeling like there's just no communication that I'm not part of this family anymore.

Steve: 17:40

Good. Let's talk a little bit about what happens at hospitalization in terms of issues that occur. And we've heard all sorts of things about,"Well, the doctor has to do this, or the doctor has to do that. You have to get a letter or a designation from them in order to proceed with DNRs." What is `it that is going on that maybe you could talk a little bit to?

Fay: 18:02

Well, I think the first thing I'd say is if you can possibly avoid hospitalization, because for those of us who are healthy and undiagnosed, it's still a pretty daunting experience. And in this day and age, you don't see your own doctor in the hospital. You see a hospitalist whose job is to get you out of there as quickly as possible, and may not have a full understanding of dementia. Most of the time, doctors will talk to family if it appears as though they are the people who are closest to this person and care about them. To be totally sure it would be good for the person to have executed an Advance Directive and the Advance Directive is just what it says. I'm saying now, while I have capacity, what I want to have happen in advance, I'm directing in advance. I want this person. These are the guidelines. And if this person can't do it, then this is the backup person. I think what happens is that doctors are so used to just doing their thing, they don't realize that the lay public is not as educated, and so there can be a lot of anger. I mean, I have a lot of doctor friends who have been assaulted because the family just gets so angry about things. So I always tell families, respect the doctor's knowledge, but don't be afraid to say, "I'm sorry I didn't understand," or if they give a suggestion to ask the question, "Can you help me understand how what you are recommending would honor my father's wishes ?" Now, the Advance Directive is important because it says who you want to make the decisions, but it describes, or usually describes, a lot of decisions. If 911, is called I'm getting out of the hospital setting here for a minute, the paramedics are not going to take time to read the Advance Directive. In fact, they're not allowed to use that because it's not a doctor's order, which was why we usually suggest that people also get POLSTs. The POLST stands for Physician's Orders for Life Sustaining Treatment. What it does is it translates your wishes in discussion with your physician into doctor's orders, so that, for instance, if you do not want resuscitation, even if your advance directive says that and 911 is called. It doesn't matter what your advance directive says. Now, when you get to the hospital, then they can kind of work it out, but at that moment, they can't honor that. But if you have a POLST that says DNR, then they will honor that, because that is a doctor's order that they are allowed to honor. Now, the POLST is not an attorney form. It is a discussion between the individual and the physician, or sometimes the physician's assistant, and if the individual cannot participate, usually, if somebody is an advance healthcare agent, they can, and you may want to change that from time to time. If you have somebody who's fairly young, they may not want a full DNR, and so it's not in concrete, if a decision needs to be changed.

Steve: 21:27

That's great. Speaking of forms, maybe there's a quick answer here. There all these forms are online. We'll just fill them out and you'll be fine. Why is that? It might be efficient, but it's not necessarily thorough.

Fay: 21:39

Realistically, people are concerned about budgeting. I think the key problem with online forms, many of them are probably perfectly okay, but one or two words can make a difference if people don't understand what it is they are assigning. And I guess I like to think about it as you know, these are some of the most important decisions you'll ever make. They're more important than buying a house or buying a car. This is your life you're talking about. And just as I wouldn't want somebody to expect me to do my own plumbing, I can download a YouTube and try to figure out how to fix the plunger, but boy, I'd be lousy at it. There's a reason why attorneys are often referred to as counselors at law as well. So the nice thing about meeting with an attorney, you're not buying the form, you're buying the counsel, kind of like a prescription. You're not buying the prescription, you're buying the knowledge of the doctor who knew what to put in the prescription. Now that being said with a lot of my people who are completely resistant to going to attorneys. Sometimes the best you can do is get them to sign a form. So download a durable power of attorney, or download an advanced healthcare directive. I mean, there are forms around if you have to rely on forms. And I respect, you know, I'm not one of those people who are complete snob about it. It's just, I worry that people don't fully understand the implications. But if you have to, maybe if you get a chance later on, to have an attorney check it, just to be sure.

Virginia: 23:22

I have a nagging question.

Fay: 23:24

Yes.

Virginia: 23:24

I heard one time that when you have a power of attorney. I had one for medical and financial matters for my mother and I never had any problems. But then somebody said, "Well, if you don't have a doctor certify on that power of attorney that your mother really does have dementia and has no capacity, what's up with that?"

Fay: 23:46

Right. So there are two different kinds of durable powers of attorney. One is one that is immediately effective, in other words, I do the document now, and I give my friend full agency now she just doesn't need it. And then there's something called a springing power of attorney. So it springs into effect only if I'm declared incapacitated. So it will depend on the wording of the form.

Virginia: 24:13

Is that declaration actually on the power of attorney?

Fay: 24:17

It usually is not. It usually is a separate like a lot of our trusts, for instance, will say, I'm my trustee, unless I'm declared incapacitated by a doctor, and it's usually on a doctor's stationary letterhead, so and so she doesn't have the ability to manage her own affairs. It's usually a couple sentences. Now, some power of attorney forms may have their own doctor's declaration, but there's no magic to that. The main thing that people are getting at is they don't want a power of attorney to be used inappropriately if the person can still make decisions for themselves. But we do have a lot of institutions out there, particularly banks, who have their own policies. I routinely do quite a bit of fighting with institutions to get them to honor a power of attorney. They're always asking for a fresh power of attorney. This power of attorney was done 10 years ago. We need a fresh one. And I always want to say, "If I could give you a fresh one, we wouldn't need a power of attorney. I would just have the person sign for themselves."

Virginia: 25:21

Right, interesting.

Steve: 25:23

Going back to this whole issue of conservatorship, we hear that term. You said it, hopefully you don't need it. What are the pros and cons of a conservatorship?

Fay: 25:33

The main cons are that it's an expensive process, but it's also very intrusive. What you are doing is petitioning the court in a public petition that this person no longer has the ability to manage these decisions, and you usually have to support that with some anecdotal evidence as to why this person is not participating or should not be in their own financial or personal decisions. That petition has to be served or given to the person with the illness, as well as everybody who is related to the second degree, which means, in English, the parents and the siblings and the children. So I always feel bad when the person who is to be conserved reads this form, they may forget it as soon as they read it, but what has it done to their soul? Now that being said, there are many times when there is no other alternative. But today, it takes long. It's very hard to get a hearing date on a permanent conservatorship within six months, and you can get a temporary but you pretty much have to show fresh blood in order to get it. And everybody who is a conservatee, the person who's going to be conserved, is entitled, particularly if you're asking for dementia powers, which means they can be placed and medicated against their will. They have a right to their own attorney. So now you've got the attorney phase of the conservator. You have the conservatees attorney fees, and often there are dueling petitions if the family doesn't get along, so the blended family might go against the wife and all of that. And so you have a nice big mess on your hands. On the other hand, sometimes they're very smooth. It's just that the person didn't plan and this is the only way we can access funds to care for them..

Steve: 27:36

That was a great answer, Super job. Let's ask you this kind of final question then, if there was one key final piece of advice that you would either give, maybe the patient, the person with Alzheimer's or MCI, for that matter, or for the caregiver; What would that be? Might be the same, but it might be different.

Fay: 27:55

My advice would be, take care of yourself and do it as early as you can. In my experience, if caregivers are able to ask for help early, get all the legal stuff in place, but also to ask for help early, so they feel a support system early on in the game. They can run the long haul much longer. It's when you feel you're alone, you're battered, you're dealing with this illness, your shattered dreams, all of those kinds of things, you wouldn't be normal if you didn't need support. The key thing is, don't be afraid. Seek help, even if you think your loved one is beyond legal planning. Try because diagnosis alone is not enough. It's capacity to do whatever you're asking.

Steve: 28:51

Perfect ending. You're amazing. I have to tell the story. When I was interviewing Faye for this podcast, I thought to myself, "Man, I need another review of my information."

Virginia: 29:02

Well, that's how I was going to wrap up, I realized that my husband and I really need to get our act together. Ours was done probably 10 or 12 years ago, and I think it probably needs updating.

Fay: 29:13

I think it's not a bad idea. I always tell people,

think of the big D's: 29:17

Decades, Diagnosis, Dementia, Death. If any of that has occurred with any of your people, and probably it's good to take a look at it. A lot of us forgotten what we said, if you just think of it as a checkup. Usually doesn't have to be terribly expensive. Sometimes it involves total redoing, but again, it's your life. It's what you want, and life changes. Takes is a neighbor moving away, or a child dying, or a diagnosis that you didn't expect occur in the wrong person. So again, it's just good mental health. There's nothing different from legal planning to medical planning. It's just part of life and good stewardship.

Steve: 30:00

Well, that's wonderful Fay, thank you again for being here, and I just want to let everyone know please tune in for this episode and other episodes. We're excited to have this and look forward to showing it in a couple of months, it will be out on the air. So thanks so much, Fay, and we really appreciate your time. Thank you for all you've done for this field.

Fay: 30:19

Well, thank you. It's an honor to be with both of you.

Virginia: 30:21

Thank you Faye.

Steve: 30:23

Spotlight on Care is produced by the University of California Irvine, Institute on Memory Impairments and Neurological Disorders, UCI MIND. Interviews focus on personal caregiving journeys, and may not represent the views of UCI MIND. Individuals concerned about cognitive disorders, prevention, or treatment should seek expert diagnosis and care. Please subscribe to the Spotlight on Care podcast wherever you listen for more information, visit mind.uci.edu.