Living as an Alzheimer's Caregiver (with transcript)

Living as an Alzheimer's Caregiver (with transcript)

Leigh Hilton is an attorney and Accredited Estate Planner and has helped over 6,000 families protect the assets that they leave to loved ones from divorce, creditors, lawsuits and predators. She is the author of the books “Who Gets Your Stuff When You Die”, “You’re Not Alone: Living with Alzheimer’s Disease” and “You’re Not Alone: Living as an Alzheimer’s Caregiver."



Frank:                           Well, welcome to Boomers Today. I'm your host, Frank Samson. Of course each week we bring you important, useful information on issues facing baby boomers, their parents and other loved ones. Today on the show is Leigh Hilton. Leigh is an attorney and an accredited estate planner, and has helped over 6,000 families protect the assets that they leave to loved ones from divorce, creditors, lawsuits, and predators. 


                                       She is the author of the books, Who Gets Your Stuff When You Die?, You're Not Alone: Living with Alzheimer's disease, and You're Not Alone: Living as an Alzheimer's caregiver. Leigh, thank you so much for joining us on Boomers Today.


Leigh:                           Thank you, Frank for the opportunity to talk to these people.


Frank:                           Great. Thrilled to have you. So, you’re attorney and you wrote a couple of books about Alzheimer's. What led into that?


Leigh:                           I've had a lot of clients who've been affected by Alzheimer's, and one of the things that I've noticed over the years is the toll that it takes on those who are caring for their loved ones.


                                      I initially wrote You're Not Alone: Living as an Alzheimer's caregiver, as a way to help people who are going through that journey to remember to take care of themselves, and to have an idea of where the journey is headed.


                                       Living as an Alzheimer's caregiver, one of the things that I talk about in the book is I had two different clients that were caring for their husbands. Both of these ladies were in really good health themselves. Their husbands got Alzheimer's, and the toll of taking care of their husbands 24 hours a day actually took a toll on their health. 


                                       Both of these ladies ended up dying from pneumonia, but I really think they died from exhaustion. And so one of the things that I want to educate people on, is if you don't take care of yourself, you're not going to be able to take care of your loved ones.


                                       And I think that's one of the hardest things for a spouse to do, to take time and take care of themselves. It's also really important for the kids of the people that are being caregivers. 


Frank:                           Right. It's so important. We can't talk about this enough and I know we've talked about this on our show before with others, but if someone was given the diagnosis for Alzheimers, what kind of preparation should be given? I think about power of attorney and such. 


Leigh:                           Right? One of the hard things that people who haven't been around somebody who's gotten an illness like this, they think it's more bright lines. So one day you wake up and you're totally competent and the next day you wake up and you're totally incompetent.


                                       But if you've been around anybody with Alzheimer's or dementia, one of the things you notice is the progression of them starting to lose their ability to make decisions is a very slow one. And so as far as legal documents are concerned, as long as they know who their family is, they know in general what assets they have, and they can hold those two things in their mind long enough to make a logical decision, they can still revise their documents.


                                       The earlier in the diagnosis that you can come in and make changes, then the more flexible we are. But even as the disease progresses, they're still going to be able to update their documents and get things the way they want to get them done.


                                       And one of the nice things about getting things done as soon as possible, is you can make sure that the right people are in place. So one of the things that I talk about a lot in my speeches is that we need a different label for dysfunctional families, because I have people come in all the time that are extremely embarrassed that they have dysfunctional families. But honestly, most of the families that come into my office have some dysfunction in their family.


Frank:                           No family's perfect.


Leigh:                            No family's perfect, and if you have people that you can't trust to take care of you, if you're unable to take care of yourself, then we need to make sure we put things in place that those people don't have that opportunity to step in.


Frank:                           Can you give us an example of the type of documents you're referring to?


Leigh:                           One of the things that I recommend for clients, whether you have a diagnosis or not, is a living trust. So a living trust in the will, both specify who gets your stuff when you die. But the distinction is with the living trust, in the event you become incompetent, the people you name get to take over next.


                                       So if you have any dysfunctional or bad people in your family, you can actually keep them from coming in and trying to be in charge by naming other people to be in charge along the way. I like that for all my families because it is a way for us to say, "We're going to stay in control as long as we can. But in the event something happens where we can't be in control, we've got some next people to name."


                                       That's one of the more important things to have in place, because if you have just a will in place, it will take care of who gets your stuff when you die, but it doesn't allow somebody to step in if you're incompetent. And then we also of course need to update the financial power of attorney, medical power of attorney, talk about whether they want life support in the event they're terminal.


                                       So those documents are also very important to put in place. But the trust provides the best coverage for incapacity. With the financial power of attorney, there's always a danger that either the person that's starting to become incompetent revokes it, or the people you are trying to use it with, like a bank, won't accept it.


Frank:                           It's interesting you mention power of attorney. I think there's an, I guess, a perception out there that if you're married and your spouse has been diagnosed with some form of dementia like Alzheimer's, that it's like an automatic, they can make decisions for them if their spouse can't. And that's not the case, correct?


Leigh:                           That's correct. You're not automatically entitled to make your spouse's decisions. And then same with, if you don't have a spouse, but you have kids, your kids aren't automatically entitled to do that.

                                       The other thing is a lot of our families, they'll have somebody in their family, a child they haven't spoken to in years. So I'll hear a mom or dad say a lot, "In the event I become incompetent, my son, I haven't seen him in 10 years, he's not even going to come into town."


                                       And you've probably seen this with the care that you give. That's the one that comes in and causes trouble, because they're going to want to make sure that mom and dad's money doesn't get spent so they lose part of their inheritance. They also can cause a lot of trouble related to medical decisions because they want to keep mom and dad alive until they resolve whatever guilt they have.


                                       One of the things that I talk to clients about is, if you have an estranged relationship with somebody, like a child, we need to specify that so as to avoid  accidentally letting them in to start causing trouble.


Frank:                           Right. So one part of me doesn't want to ask you this, but the other part does to help educate people. But I got to believe you've seen some horror stories of families who did not plan properly that caused issues, and if they would have planned, it would have made life easier.


                                       Anything that you might want to share? And I'm only asking you this for those that are listening to this, to make it clear to them that how important it is to plan. Is there anything that comes to mind that you could share?


Leigh:                           One of the things that comes to mind is the people that just wait too late to get something done. So I've had people come in who their spouse has been diagnosed with Alzheimer's about eight years before they come into my office.


                                       And at the point where they come into my office, the husband doesn't even remember how to spell his own name. Or once, we had a husband come in who was convinced that his wife was his sister. He couldn’t even recognize his family. 


                                       At that point, we can't do documents for the person that has the diagnosis. And we don't know, actually none of us know, but especially if you have a diagnosis, you don't know what time or when you're going to cross that line.


                                       I've had people who one day the husband was reasonably aware of what was going on, and the very next day he didn't know who anybody was. A lot of times with Alzheimer's and dementia, the progression is slow, but there's kind of a falling off point where they're not going to be able to do their own documents.

                                       The other thing that I've seen happen is, as I told you, sometimes the healthy spouse dies first, before they’ve had the chance to update their papers. So when healthy spouse dies, the spouse with Alzheimer's or dementia suddenly becomes in charge of all the money, and that's not a good result.


Frank:                           What problems are caused when something like that happens?


Leigh:                           Well, one of the things that's caused as far as a problem, is if they're starting to have bad judgment, then they might give the money away. I actually had one client, her father sold some land for $400 an acre and he thought he'd made a deal because he had bought the land back in the 1940s for $100 an acre.

                                       He was all proud that he had made four times what he paid for the land. Well, land in the area that he sold it in, you couldn't find land for less than $8,000 an acre, so he lost a dramatic amount of money on it. A lot of times, even though they're able to function day to day, letting them be in charge of money causes them to either give it away or sell something for less than it's worth.


                                       The other real important reason why you want to protect the money, is in the event the person with Alzheimer's has to go to a nursing home. If the healthy spouse has died first, left everything to the person with Alzheimer's, we can put it in a supplemental needs trust.


                                       The supplemental needs trust is designed to take care of them, but Medicaid doesn't count that money against them, and also VA doesn't count the money against them. So that's another planning opportunity that we can utilize when somebody first gets a diagnosis, but if they don't do that ahead of time, then all that money has to be spent before they qualify.


Frank:                           You had mentioned nursing or if they have to go on Medicaid, there's a perception out there that you have to be down to your last dollar to get approved on Medicaid. But I guess what you're saying is that if you plan properly and set up the appropriate type of trust, you could protect those assets and get that person approved on Medicaid so they might be able to stay in a particular health care facility that accepts it. That would be a tremendous help to the family from a financial standpoint. Is that what you're saying?


Leigh:                           That's what I'm saying. And the other thing that's nice about protecting some money is the care that you're going to get on Medicaid, you're going to want more care than that. So nursing homes in our area, it's one caregiver to 40 people. So if you've set aside some money, you can actually hire a non-medical in-home care company to come in and provide extra care.


Frank:                           That would be private pay.


Leigh:                           Yes, you privately pay. So you privately pay out of this trust for extra care more than the federal government will pay for, so that your loved one is taken care of better than they would be otherwise, or has more choices available.


                                       One of the reasons why it's a really good idea to protect some money is so that your family can pay for things that you're going to need along the way. In particular private pay for that in-home care or in the nursing home care.


Frank:                           Right. Well, at least they could utilize the money that they have available to provide that additional care that they might not be able to have afforded.


                                       I know we had mentioned your book before, or both of your books, and I know you probably have some additional advice for family caregivers, certainly taking care of themselves. It's sometimes easy to say, harder to do, but do you have any suggestions to family caregivers in addition to what we've already spoken about?


Leigh:                           One of the biggest advices I would give to them, and it's part of what we've already kind of spoken about, but I think it's important to emphasize, is getting help, taking breaks, taking time to take care of yourself, to go to the doctor, to go to the grocery store, sometimes by yourself.


                                       I'm a big proponent of the non-medical in-home care, because it's a way for you to have someone stay with your loved one, make sure they stay safe, but it also ensures that you can have breaks along the way.


                                       Many times, having somebody come in and help with the care can allow you to get a good night's sleep, because otherwise a good portion of the people I work with who are caring for somebody end up spending the whole night awake and listening for signs that the other person needs help.


Frank:                           Got it, got it. Now, changing gears a bit, would you mind giving an overview of different types of elder law attorneys, and what specific type of attorney, like yourself, should someone seek out in their area, and how they might be able to go do that?


Leigh:                           Elder law is kind of a way to say that we help with Medicaid, VA benefits. Some people use it as a phrase for guardianships, is saying that they do that area of law as compared to estate planning, which means we do the wills and trust, specifying who gets your stuff when you die.


                                       Something that’s unique about our practice, and one of the things I would recommend that you seek out in any practice that you hire, is that we do both. Most attorneys offices will either help you create your will and trust, or help you with VA benefits and Medicaid, both of which are extremely intertwined. 

                                       If you come in to our practice to get your will done, and we realize that one of you has a health issue, we're going to talk to you about protecting assets for Medicaid.


                                       The other thing that's real important is if you’re interested in getting veterans benefits for in-home care, that you work with a firm that also does Medicaid. Because there's firms out there that only do VA benefits and if they narrow their focus to just VA benefits, a lot of times that will make you incompatible for Medicaid. So you need someone to look at both along the way.


                                       And so even if you're dealing with a financial planning firm related to VA benefits, make sure the people you're working with also help with Medicaid.


Frank:                           Yeah, and if you set up a trust for the sole purpose of protecting assets and get approved with the VA Aid and Attendance program, then later on realize that they need to go on Medicaid, it's going to be more difficult this way. That’s why your practice does it at the same time. Is that correct?


Leigh:                           That's correct. There is a few things you can do under Aid and Attendance that you're not allowed to do under Medicaid. For instance, under for Aid and Attendance, you can pay a family member to take care of you, but under Medicaid any of those payments are going to count against you. So that's one of the things you've got to be sure and coordinate, and then also think through in how you're setting up the plan.


Frank:                           All right. Do you see laws and regulations changing as it relates to the work that you do, especially on Medicaid?


Leigh:                           Medicaid changes are slow to be enacted. We happen to be in a state that's one of the ones that's kind of a late adopter. So we kind of have the advantage of being able to see what happens in about 40 other states, and then eventually it comes to ours.


                                       I always watch the trends but I'm able to see it trickle through the other states. Some of the other states are quick adopters of changes, because Medicaid's statewide. Each state administers it on their own. It's a federal program, but it's administered on a state level.


                                       Every state has a little bit different rules. But one of the things you can learn from, is what's happening in the other states to see what your state may eventually do as far as changing things.


Frank:                           We may not have mentioned that, but you're in Texas.


Leigh:                           Right.


Frank:                           So maybe you could share with people if they wanted to learn more, how would they get in touch with you or somebody at your firm? And if they're not in Texas or not in the Dallas area, if they wanted to talk to someone with an expertise like yours, how would they go about doing that?


Leigh:                           To contact our firm, you can call us at 940-387-8800 and our website is which is L-E-I-G-H,

                                       But if you're in a state other than Texas and you need help, you can do one of two things. You can actually call our office and all the people that answer our phone are trained to help you find attorneys other states. So that's one way you can do it.


                                       The other is you can go to a website that's N-A-E-L-A, dot, O-R-G. So it's It stands for National Academy of Elder Law Attorneys. You asked earlier how I would choose an attorney to help me with either Medicaid or Aid and Attendance benefits.


                                       I would definitely choose an attorney that belongs to that organization. It's one where you can keep up  with what's going on in those two areas, and it's a way to make sure that they know enough about the area.


Frank:                           Right. Great information. So we just have a couple few minutes left, and I'd like to go back to your books. What would you say would be unique and what would people expect if they got your books. How would it be different than other books on the market?


Leigh:                           One thing I spent a lot of time on was how to write about what we do in a way that will make it easy for the people that read it  to understand what we're actually talking about. We're not trying to educate you how to be a lawyer. We're actually trying to get you to understand what things you might want to do in your situation.


                                       And the other thing I really wanted to approach it from is how do you take care of yourself? How do you make sure your loved ones are taken care of? There's a certain amount of information in there about research related to Alzheimer's and dementia, but I tried not to have the book be too technical, because I think there's a lot of books out there that educate you on things but don't give you actual action steps that you should take or help you think through what you need to do for your family.


Frank:                           Got it. And how would they go about getting ahold of these books?

Leigh:                           You can get the books off my website. It is actually at, again, L-E-I-G-H, I actually provide the Alzheimer’s books in exchange for you donating money to the Alzheimer's association.


On our website you click on the link, donate at least $15 to the Alzheimer's Association, and then we'll send you a book.


Frank:                           Great. Great. So if you could leave... We have a, I'm sure a number of listeners that are maybe just starting to take care of a loved one. Maybe, let's say someone has been diagnosed with early stage dementia or Alzheimer's, and they've got a tough road ahead of them. What recommendations do you have to them? What can you leave them with, your thoughts, if they're in that situation right now?


Leigh:                           One of the important things to do is to talk with an attorney and make sure you've got the right documents in place, because the earlier that you get documents in place, the better. But I think the most important thing I would leave them with is take care of yourself. Make sure that you are taking the time to rest.


Frank:                           Great. Great. Leigh Hilton, check it out at, L-E-I-G-H,, and I just want to thank you so much for joining us on Boomers Today. Thank you very, very much, Leigh.


Leigh:                           Thank you for this opportunity.


Frank:                           Yeah. I want to thank everybody out there for joining us as well. Just be safe out there, and we'll see you on another show of Boomers Today. Thank you very much.


Living as an Alzheimer's Caregiver (with transcript)