Caring for a Loved One With Alzheimer's: What Families Should Know

0:00 Cold open

Milton: How do I deal with a wife who has Alzheimer's disease? The first three years, she turned from a sweet, sweet lady all her life, perfect marriage, we've been married for 60 years, into horror. She's temperamental, she's angry, unpredictable. She would throw things at me, slam the door, and just really, really impossible to live with.

John: I've lost two parents now in a pretty dramatic fashion. When you're in the throes of it, when it is really heavy and dark, it will get better and better as time goes on.

0:33 Welcome: caring for an aging loved one

John: Welcome back to Experience Matters with Milton and John. Today it's kind of an important topic, where we're talking about how to care for an elderly family member. It's near and dear to my heart, because both of my parents, I had to see them through their final stages. In the case of my father, it happened when I was much younger. And my mother passed just a few years ago. So I have a lot to say about this topic.

And I wanted to share my experiences so that if anybody's going through this, they can take some nuggets of wisdom. So Milton, from your perspective, you have a lot to say about this too. Can you talk a little bit about what your perspective is?

Milton: Yeah. Actually, the topic you and I talk about is really a little bit different, because you're talking about, in a sense, parenting: taking care of your parents, right, because they're old folks. For me, it's actually taking care of my wife. I'm 85, she's 86. Well, it is about taking care of the aging, but it's really my contemporary, in a sense, my partner. So what would you like me to talk about?

2:02 The diagnosis: "not much more you can do"

John: So can you talk a little bit about your experience when you first heard about her medical diagnosis and how you approached it?

Milton: Somehow, John, I don't know if it's the case, but you seem to avoid the word Alzheimer's. [laughs] I wanted you to tell the audience that. I know, but yet this is really a very hot topic.

John: Okay.

Milton: So I'd like to change your question about me. It's about how do I deal with a wife who has Alzheimer's disease, which I think a lot of people are struggling with. And again, I'm not a medical person, but I'm a well-educated engineer. So I approach that issue from an engineering standpoint: how do I deal with the issue in a fundamental way? So I think I came up with a pretty interesting point of view that I wish would be picked up by the medical professions.

Because when my wife was diagnosed with Alzheimer's eight years ago, we went to the best neuro doctor in this area. And frankly, every neuro doctor in this area seemed to be trained by him. So he's really famous. And both him and the student (later on we went to have a student as a care doctor, because he's far away), the message is really straightforward, and I think you hear that a lot. You can slow down the decline of an Alzheimer's patient by medication, and she got the good medication, right? So presumably that slowed it down. But there's really not much more you can do for her. They didn't tell me, I pushed them for that answer, but she would die, as a general rule, within 8 to 10 years. And so that is what the professionals believe.

But today, you look at my wife, 8 years later. She seems very healthy.

John: She seems very high energy, very positive.

Milton: Yeah, she's as healthy as any 86-year-old. In fact, healthier than most 86-year-olds. But she has no short-term memory. She could not remember, you know, our daughter just visited her yesterday, and she forgot that she just ate, right? But she's happy, upbeat, witty, perfectly normal. So what have I done right? And that's what I'd like to share on this video. I'm not saying I'm right, but please, the professionals in this field, take that as one data point to extrapolate: what better care can we give to Alzheimer's patients?

4:55 The first three years: operating out of fear

John: So why don't you talk about what you focused on when you first heard that diagnosis?

Milton: Yeah. Well, you know, okay, well, I've got to deal with it. And it was really mild symptoms, because they do these tests to see what you've forgotten. But then things got really worse fast. The first three years, she turned from a sweet, sweet lady all her life, perfect marriage, we've been married for 60 years, into horror. She's temperamental, she's angry, unpredictable. She would throw things at me, slam the door, and, you know, just really, really impossible to live with for the first three years or so.

But when you're a lemon, you make lemonade. You deal with it, right? So the way I, as an engineer, see it: people have weird behavior because they're operating out of fear. And, you know, psychology, the mindset, is so important to health. And I never forgot the story, which I don't know if it's true. I think it's somewhat true. There's some Indian tribe in South America: when they decide to die, they climb up a tree and will themselves to death. And that's how powerful the mind is, right? So to me, then, I want to take care of her mind, her psychology first, and then her overall health. So that's my summary of my approach, and I can go into detail if you ask me questions.

6:48 "I'm your memory": taking the fear away

John: Sure. So just to summarize, what you took away from your approach was you dealt with her mental well-being first.

Milton: Yeah. That means, again, as an engineer, I identified the problem, and I think the problem is fear. And therefore, I eliminated all her fear, which is like, "Oh, I can't remember the thing." "That's okay. I'm your memory." "You know, I don't know what to do." "Don't worry about it. I'll take good care of you the rest of your life," and so on and so forth. So I eliminated the fear. I eliminated the unknown. Therefore, that psychological threat has gone away.

John: Right. And so once that happened, how did her situation improve?

Milton: Well, like I said, today she's really healthy. But I think the next question you should ask me is what do I do beyond that, right?

7:42 Beyond the mind: diet, exercise and sleep

John: Sure. Okay, I'll ask. [laughs] Outside of dealing with her mental well-being, what did you do next?

Milton: Well, getting to our earlier podcast, very simple: how do you manage your health, right? To me, well, we address the mental state, right? And then the second one is that, well, she no longer has control of her own mental state. So it's really me helping her have a positive mental state, right? And then exercise, diet and sleep. I think those are the three other ingredients. Did I miss something? I think there must be something else. I think that's it. We talked about meditation and dealing with stress.

John: And then exercise, health.

Milton: Okay, so let me talk about each one. I will pause and let you ask questions for details.

John: Sure.

8:39 Food: a concentrated soup and a little fat

Milton: So first of all, I think food is really important, and she doesn't eat much anymore because of lack of appetite. And I do all the cooking. That's why I'm really busy from morning to night. I'm 12 hours nonstop working, including cooking and taking care of her, in addition to my businesses, right? And concentrated food, in a sense of food with concentrated nutrients.

So we have a very healthy soup. People always know that, you know, a Jewish mother says, "Drink chicken soup," right? So I have a very concentrated chicken and pork soup that we drink regularly every lunch. And I can give you the recipe if you like. And by the way, you can write in to get my recipe, right?

And the secret sauce is the following. Everybody knows you need a high concentration of protein. It's good for your health at any age, especially for the brain, right? And so when you boil soup, what comes out first is water-soluble protein, which is pure protein that goes into your lower intestines and gets absorbed right away. I didn't know that. I just Googled, and Gemini, and I found all these things, right, and I put it all together as an engineer. And so for old folks, that's a really, really healthy thing to do: concentrated water-soluble protein that bypasses your digestive system to get absorbed by your lower intestines very efficiently. [coughs] There's a tick in my throat, sorry.

So aside from that, again, it's a Mediterranean diet, and not very much. But one of the secrets: in addition to protein, you also need some fat. And again, I'm an engineer. I pick up things anecdotally and apply them blindly, so please confirm if I'm right or wrong. It's that children with spastic, spastic, in a sense...

John: Autistic? Are you saying autistic?

Milton: Not autistic, but spastic. You know, they go into shakes.

John: I think what you're talking about is they have, like, seizures.

Milton: Yeah, seizures.

John: Okay.

Milton: And so, again, you know, I pick up things and I never forget the interesting stuff that I pick up. I think I watched 60 Minutes showing how, for children with spastic problems, there's a diet, according to 60 Minutes, and that's widely applied, widely accepted: a very high concentration of fat in the diet, and it will actually cure them. And yet we are taught to avoid fat altogether. And I think, based on that little piece of a 60 Minutes video, I decided to have a little fat in our diet, mostly olive oil and a little bit of chicken fat on top of the soup. Not much, okay? I think that's it. That's about all I have on eating healthy, and the little fat. That's all I have to say on this topic.

13:05 John's mother: stroke, dementia and COVID isolation

John: Okay. I actually wanted to talk a little bit about my mom's story. She's actually a counterpoint to what your experience with your wife was, in that when you initially helped her out, you focused on her mental health. My mom, by way of example, had hypertension, and she had a stroke, which contributed to some level of dementia. And with that dementia, she reverted to being like a little kid. And there's nothing like seeing your parent become that.

Milton: Yeah, they do.

John: And she was highly dependent on us. And so there's a different dynamic to this discussion about her dependence and how my family stepped up. And one of the things that happened was during the COVID crisis, where there were severe restrictions on the time that we could spend with her. And so when that restriction happened, she spent days alone by herself in her room. And that's when her health took a severe turn. In fact, her legs atrophied, because we would try to get her to walk, and her legs atrophied, and she reverted. She deteriorated pretty aggressively.

And I wanted to share that story because it is the counterpoint to your experience with your wife, where you focused on her mental health. And it worked for you. And if you don't address that, a lot of bad things could happen.

One thing, and this is something I didn't even tell you about, but one thing that we actually did with her, where she was starting to heal before the pandemic, was we actually put her in what they call a hyperbaric chamber. And it actually enriches the oxygen in her blood. And it helped with a lot of her skin issues, and it made her a different person when we did that. That was just something interesting that came about with us experimenting.

Milton: Yeah. I don't want to forget: later on, you remind me to also talk about exercise, okay? But getting back to your specific situation, in some sense you confirm my suspicion that mental state, you know, fear or whatever else, has a tremendous health impact. I think that's well known. Stress is really impacting health, because it changes your behavior, you know, modifies your behavior in a weird way, and then it gradually impacts your health, and your immune system declines, and therefore you decline, right? So I think in some sense COVID really didn't help, right? Because then she's put in a state, probably getting really less help from the caretakers, in isolation, essentially. And that really is, I think, a major cause for demise.

John: Yeah. I think what I'm seeing, my interpretation of what you've presented, was: if my wife was diagnosed with what your wife had, it takes a special person to go beyond it, find a positive spin to it, and consistently try to improve your life. Saying, "Hey, I found a way to help her." Not, "Woe is me, I'm going to get depressed about it." No, it was more of a positive... you were proactive about the situation, and you found a way to help address it and not wallow in self-pity. That's what I appreciate about how you approached your situation.

Milton: Thank you. I think we must address the exercise aspect of it. But beyond that, early on in our offline conversation, you also talked about care from the family, by the family, right? And so I think we also need to address a little bit of that. So those are the two topics that we should not forget.

17:47 Exercise: walking five times a week

John: Milton, tell me about how exercise affected your approach with your wife.

Milton: Well, I'm not an exercise nut, not a health nut, but I did do a lot of running, and I do address aerobic, the heart health. And in spite of that, I don't think I have such great genetics to bypass and a stent and a heart attack in the meantime. [laughs] But I think it's taken care of now. Everything is taken care of. I think I have another 10 years ahead of me.

But exercise, I think, is very important to maintain the health, in her case, because she's sleeping so much. So to me, then, if we don't get her heart pumping, she's going to decline very quickly, because that's the aerobic aspect. She's not doing any anaerobic, but, you know, you can't do everything at her age. So we walk religiously. I'll help her walk with her, because my feet are not very comfortable. She walks five times a week, and my daughter sometimes comes and walks with her on weekends as well. So she walks five to six times a week, very vigorously, because she has walked all her life for exercise: about two miles in about one hour and 15 minutes. So it's pretty vigorous.

John: That's fantastic.

Milton: And that gets her heart pumping. And that's the essential part to keep her healthy, because she sleeps so much. I don't want to disrupt her sleep, in some sense. Sorry, selfish, but it frees me to work. But the point is that she probably needs it. You know, the body knows how to take care of itself. So anyway, in some sense, that brings up your question about, you know, expectations for your children and all that.

19:47 John's father: tag-teaming as a family

John: Yeah. Milton, I want to talk about my experiences with my mom and dad. It actually was in two different phases of my life, so if you would bear with me here. When my father was diagnosed with cancer, I was 16. I was actually in my junior year in high school, and he passed away during the summer of my junior year. And when I was a senior, I was thinking about colleges and all that stuff.

And his cancer advanced so aggressively that it took... So I have three siblings, and each of the three siblings had to take a special role. My mother is not formally educated. She came from Taiwan with less than a junior high education, but she made something of herself. But she relied on us to interface with lawyers and accountants and all that stuff. So at 16, that was my role: to kind of figure out those things. My sisters were focused on my dad's health care, and my brother as well.

And the reason I'm saying all this is I was fortunate enough to have my loving siblings there, because at 16 you run out of emotional energy. I mean, we had our roles and all that stuff, but I remember we were tag-teaming in the ICU with my dad, and there's only so much you can take. And after that, you have to tag out, just like a wrestling team, and say, "I've had enough. I'm done. I need somebody else to come in." And so having family members be part of that experience with you is very, very critical. It was a critical learning lesson for me.

21:48 Expect nothing from your children

Milton: Yeah, I don't know if I have that wisdom, because I have the principle of interacting with my family members, which namely is only my son and daughter and their children. My principle is to never bother them. That's a Chinese principle, in the sense that I don't want to in any way burden them, to slow them down. And that was how my mother handled me. She never wanted me to even take good care of her. She just wanted to be independent.

So I don't know if I have any great advice. But I think, you know, first of all, I'm really sorry that you've gone through that experience, which must be horribly traumatic. But I'm glad also that you have a strong sibling relationship to kind of support you. And I bet you still have a really good, close relationship with them, because these experiences are endearing. So I don't know, maybe you should ask the question again. I lost my train of thought.

John: I think we're potentially coming in from two different perspectives. Obviously, I was 16 years old. You're in your 80s.

Milton: So basically, in short, I don't expect anything from my children. And the way I feel is that anything they give us is a gift. They don't owe me anything, and I don't expect anything from them, but anything extra they do is much appreciated. And that's my attitude. So my son lives in Hong Kong, and he comes, and he could have stayed at his own home, but he stays with us when he's here, to be staying close. So I think the feeling is really strong. But in terms of actual interaction, it's really minimal, because they have their own lives. They've got their own children. So my daughter occasionally will come and walk with her mother. I appreciate it. I don't expect anything more. I mean, the thing about relationships with children is that if you expect more, you get disappointed, and they feel pressure to take care of you. It doesn't work.

24:16 Obligation or opportunity?

John: Well, all right. So can I push back a little bit? And that is: what if we were to not present it as an obligation, but an opportunity, right? At some point, my kids may experience this, and I want them to have that opportunity. In fact, when my mother was passing, I wanted to engage my kids, to see if they could be of service to their...

Milton: Yeah, you see, you're a good man, because you have empathy, and you realize when you do somebody a favor, you can afford to do the favor, but your reward is not necessarily that the person will do anything for you. It's that you're feeling good about yourself. So on the other hand, if I expect my children to do things for me, then it doesn't work, because they are saying you're demanding. So it has to come from them. When my daughter comes and visits, it's good for her: she feels like, "I did something for my mother, because she took care of me when I was young." You see, so everything becomes a plus. But if you expect your children to come, "Hey, once a week, take care of your mother," that is going to be a terrible relationship thing.

John: But by the way, I met your son. I love him to death. I'm not implying that he's not...

Milton: No, no, but I'm saying, I'm talking about myself, in a sense. I don't expect anything from them, and that may work, right?

25:53 Caregivers need support too

John: Right. So I wanted to have a message for somebody out there that may be going through some of this stuff, and I know that you have that perspective. My words of advice to somebody going through something like what I went through is: you need to have somebody as an emotional support to go to, whether it's your church, whether it's your book club, whatever, because you will run out of emotional energy. That's just what I experienced, twice now. You will run out. You need to find some way of recharging your batteries.

Milton: Well, I mean, I agree with you 100%, 110%. But on the other hand, how can I not remind you to be self-reliant? You can't count on anybody in the world. And do I really need the advice to go to a priest, and they say, "Yeah, good boy, you're doing good," and so forth? I don't need it. So to me, everybody is different. Being self-reliant, positive attitude, seeing the possibilities, coming up with reasons to take care of things: that's where my fallback is. You're not wrong. I mean, we're just different.

27:06 Trusts and medical directives

John: Okay. Can we talk a little bit about... I want to talk about estate planning, and I'll walk through a little bit of our experience. When my mom got her stroke, and I was an adult, and then she experienced dementia, we happened to be at a nursing home, and somebody's like, "Hey, you really should put your stuff in a trust, because that's going to be helpful." And boy, was that critical. We then spoke to an attorney, and we got medical directives sorted out while she still had her faculties, so that there were no hurt feelings among siblings. We determined who is the executor of the estate. So if anybody's going through this, my word of advice is to make sure that you have some level of estate planning in play. And I think you have some perspective on that as well.

Milton: Yeah. John, you did the right thing. For the audience who doesn't really know this aspect of it, let me expand a little bit on that, okay? Basically, think of it: I'm an entity. I'm a person, right? I have a Social Security number. And so when I die, it stays in my estate, under my name. And it's just a whole bunch of legal issues to unravel: how do I divide it and so forth, right? So the trust is a way to put everything I have into an entity called the trust. So when I die, no problem. The trust is already in place. The trust lives on. So that's one aspect of it, and it's very wise you did it.

And a requirement of that... you know, there's a way to fix everything, but without having to fix it, it's to have it when the person is still legally clear-minded, signed off into the trust. Then it's legal. So you want to take care of it when she is clear-minded, right?

John: Yes.

Milton: Okay, then we can go on to talk about estate planning and all that, but go ahead.

John: Right. No, I just want to emphasize your point, because not only is it legally binding, but the other family members know that that person made that decision when they were of clear mind. And it saves a lot of...

Milton: No arguments, and everything is prearranged, and it simplifies the estate issue.

29:48 Estate planning and taxes

Milton: But I think a much more complicated issue, and I think it's actually not that complicated, but I do want to mention one thing, is estate planning. You know, I'm 85. At about 75, age 75, I said I'd better do the estate planning, and I'm probably a little too early. [laughs] And the estate planning is really essential, because if you have a reasonable-size estate when you die, there's a tax ramification. You know, that's like, what, 55%, 60% tax on what you saved from your life. Of course, there's a minimum deduction and all that, you know, the minimum amount and all that. But if you have anything before that, you can do estate planning: give away the excess that you'll be taxed.

Okay, so what you can do is take part of your assets and distribute them to your children and your grandchildren. And there's also a vehicle called a heritage trust, which would go into a generational trust, where the amount that would have been taxed, you can put in there as a gift, because there's a very large amount of gift exclusion. And you can also put in the gift under the annual deduction on gifting. So that's a really good vehicle. And then when you do that, there are a lot of vehicles for discount. Whatever assets you have can be transferred to the trust at a discount, and it's not very stringently controlled.

And so those are the vehicles that you should explore, to avoid a surprise: "Oh, man, there's a big tax question." Although, I think the tax exclusion is a pretty large amount, so many people don't have to deal with that. But nonetheless, if you have a substantial estate, you should plan on that.

John: I actually think that if you even own one house, you should look into this. Because as I understand it, and I'm not a lawyer, you can talk to a lawyer or ChatGPT, but if you don't have it, then it gets tied up in probate court, in which case that drags out, and it's very difficult to have that resolved cleanly.

Milton: Yeah, I wouldn't equate that. I think that depends on how much assets you have. If your assets are not very large and you have a will, like the trust you talk about, the house will be in the trust. And so one is to take care of the dispute problem, you know, settling the estate. The thing I'm talking about is addressing the tax issue of the estate.

32:45 Takeaways: don't despair, and it gets better

John: Got it. Okay. Great discussion today, Milton. Really appreciate all your insight. Do you have any last words to give to the audience?

Milton: Well, I guess I always like to summarize, if you had to walk away with the so-called takeaway, what is one or two takeaways. It's that I think Alzheimer's is such a traumatic experience for anybody, right? The takeaway I have for you is: don't despair. You know, think beyond "there's nothing that can be done to help." But take my advice with a grain of salt, in terms of health and positive attitudes and diet and exercise, et cetera. And think about it. And if nothing else, that will give you hope. And I think hope is so important in life to deal with issues, and in this case, dealing with Alzheimer's.

John: So my little nugget of wisdom here, from all my experiences, is that when you're in the throes of it, when it is really heavy and dark, it will get better and better as time goes on. I've lost two parents now in a pretty dramatic fashion. And eventually, the next day is half a percent better. And then maybe by the next year, it's substantially better. So it will pass. You just have to have a good attitude and fight your way through it.

Milton: Yeah. Time heals everything.

John: Absolutely.

Milton: And just think positive, and you know, time will heal everything and help you deal with it.

34:28 What's coming next

John: Thanks for watching our channel this week. We're hoping to come back next week with another exciting topic.

Milton: Yeah. Maybe, John, we should give people a little preview of the topics that may be coming up, an overview. Well, basically, our principle is very simple: to talk about something that we know something about, that we have firsthand experience in, that justifies giving us the right to talk about it. And in areas we don't know, we'll invite experts in. And so the area I like to talk about, I feel I'm confident to talk about, is health, taking care of the Alzheimer's issue. I've started a lot of companies. In a sense, I took two companies public and helped invest in a lot of angel investing. So I can talk about business and management and startups. So there are a lot of interesting topics, a little bit of an unusual combination with us. And like I said, these are the topics that we have on our mind.

And I encourage you to send in any question. You'll be surprised how much we know. I hate to brag, but I think we are two pretty smart guys and really motivated guys. We study a lot. We read a lot and so forth. So like I said, if it's something we don't know, we'll do some research to give you a good response. And so please write to us directly, and then we'll respond specifically to your case, and then generalize the discussion for the broader audience. And so I thank you very much for watching.

John: Yeah, no, I appreciate your time, Milton, and we're looking forward to it.

Milton: Yeah, I'm happy to do it.