Life of meaning and purpose: Sam Simon the "Dementia Man"

In this episode of the Ask Dr. Mia podcast, host Dr. Mia speaks with Sam Simon, a lawyer and playwright diagnosed with early-stage Alzheimer's disease. Sam shares his journey, including the impact of his diagnosis on his family, the importance of communication, and the challenges of navigating legal and financial planning. He discusses the emotional and practical aspects of living with dementia, the role of family dynamics, and the significance of advocacy. 

Sam Simon shares his personal journey with Alzheimer's disease, discussing the challenges and adaptations he and his wife, Susan, have made. He emphasizes the importance of finding meaning and purpose in life, and the power of love and connection in the face of adversity. 

To learn more about Sam and his play Dementia Man visit his website at https://www.dementiaman.com/ 

Follow Ask Dr, Mia on Instagram, BlueSky, and YouTube 

Transcript

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Welcome back to ask Dr. Mia podcast. Today I have a special guest with me, Sam Simon. Sam has been a lawyer for a long time and he's also a playwright. This is his, as he defines it, his fourth age. He worked for Ralph Nader's first advocacy group and has spent his career advocating for a number of different safety and disability rights and he was diagnosed with early stage Alzheimer's disease in 2021. And since then he has produced his own play called Dementia Man. And I'm really excited to have him join our audience today to talk more about his journey as well as how being diagnosed with dementia has really affected him as well as his children and his family. So welcome to the podcast, Sam. Thank you very, very much for having me. And I love the idea that we can have a conversation that isn't just about me, because it it affects all of us in our family. Absolutely. I know you have, you know, written this self produced and acted out play called the Dementia Man where you shared some of how you were diagnosed as well as your existential thoughts about the diagnosis and how the future may play out. But can you maybe share with us kind of how what you had talked about with your children? around that time or since then in terms of your own memory problems. Well, sure. And maybe if I can start and say I'm living in McLean, Virginia, I have a wife of 59 years, six months, three days, 24 seconds. 59 years. We're going to be 60 years in August 23rd, 2025. And I have two adult children. Our son, his name is Marcus. Same name as my father. And they live nearby. Our son lives at Five Minute Drive away. He's a lawyer. He's also a public official, by the way. He's a member of the Virginia legislature. And he's 26 in seniority out of 100. Yikes. Anyway, so he's been doing that for the last decade. He's also has a law practice. Our daughter. Rachel, so my son's name, Rachel, named after her grandmother, Rose, is a pediatric dentist. One's a lawyer, the other's gotta be a doc. No, it's easy. And she lives in Maryland, not too far from us, but it's, know, when one lives five minutes, 45 minutes in the drive with traffic can be three hours sometimes. And we have four grandchildren. Each of our children have two children. And so we feel in some ways so lucky that we live in an area and our children and grandchildren are nearest, although two of our grandchildren are away in college and next year the third one's gonna go there. Or just time pass fast. So yeah, I don't know if they noticed the earlier symptoms. I didn't necessarily notice them as being distinct. I owned my own company for a long time. I was successful in my business. I had sold the company. Our big first family deal with health challenges was when my wife, Susan, was fine now, went through advanced breast cancer. And there was a time when the doctors pulled me aside and said, get ready. A lot of things happened. My son was in the Army at the time. They were scheduled to go to Korea. They got a compassionate change of orders to live nearby and be here. My daughter was in dental school at the time. And I was her care partner. I've learned, and she's an unlikely survivor. Very thankful for that. Very unusual now that the roles are changed. And so we're a family where that happened. And it's so different because in part, you have, mine's not moving that fast. It's not like from uh-oh to And I don't have a cure option. Citizen dead and is unlikely survivor. So the first thing we had to do, this happened in two phases. I was first diagnosed with mild cognitive impairment. So I knew something was going on, riding, driving along wrong side of the road. I get lost. I would occasionally lose what I call cognitive awareness. It is I would... One without my wife, one with, I would just say, where are we? I just didn't know. All of a nothing was familiar. And it didn't last too, too long, but something was going on. I don't know if it affected our kids as much, because they're now settled, they're in their business, they have their families. But when we told them, they of course said, you know, how can we help? What do want to do? We didn't take drastic actions. But getting a, as you probably know, getting a mild kind of impairment just meant I performed poorly on a standardized test that's out there. It's a gold standard, right, that I'm tested against everybody who's just like me. And I did poorly. Five hour long test. And went through that. but then. We were lucky we finally got the ability. We went to Georgetown University here, hospital. We recommended to it and we tested and there was a drug trial and that's what enabled me to get, you know, at the time they didn't have the blood test or any other way. I had to have a PET scan with contrast, at three to $5,000 a piece. But now I'm nominated for a drug trial and the sponsors of the trial paid for it. Sure enough, I'm what's called amyloid positive. so the first thing we had to do is, well, the test results were sent to our new neurologist, not the first one, it was so bad. And by the way, I had never been, had to have a terminal diagnosis delivered to me. I've empathized with you doctors. It's hard for doctors as well as a patient. Our neurologist wouldn't look up. He was looking down at the piece of paper. He sort of mumbled. said, think we're at a new diagnosis, and he sort of mumbles. At any rate, so we had to tell our kids. That was, and. I'm curious, what was their reaction when you told them? Well, it was loving. How can we help? We wanted it. They each wanted it. They're both very busy professionally and engaged, so they need to make their own arrangements, come have a meal together. We're Jewish and we're very involved in our synagogue, and so they actually wanted to come to services with us after it. It's a religious moment. you you've got an existential moment. so they're loving and they're caring. And I'm trying to remember who told us the first time to do the first thing you need to do. And who was it? Maybe it was our accountant. Maybe it was our son. So our son's now a lawyer. He's got a practice. In Virginia, you're not a full-time legislator. He's a practice. It's a real estate law. But I don't think it was him. Somebody told us, you need to see your estate lawyer, which was not obvious to us. Now you didn't hear that from your doctors. No. And the estate lawyer said, we're going to have to go through all your financial stuff. I think it all ought to be in the name of your wife or your children. You need to rearrange who's second. you know, second, we need to meet with your children. So I think that was the most dramatic moment for everybody. It makes it more real in some ways. So we get a lot of work done and things. And it's a practical kind of thing. We meet in his office. I had never thought of it at first, but he had talked to us about a client who had not taken himself or office checks required to people. And he wrote this gigantic check for somebody in fraud. I still think I would never do that, but I don't know, right? hard for the person with dementia to know what they don't know, right? What they don't remember. how it'll affect me. So the kids have to hear this too. So we're lucky, they're very mature. We are fortunate. There were times when everybody was growing up and our son, the lawyer and public official, we won't tell too much about him as a kid, but he was a tough kid. Anyway. Well, it sounds like you guys have had some really tough conversations, both in terms of your wife's pretty sudden diagnosis of advanced breast cancer, but also, once you did start the process of estate planning and the legal documents, that was another opportunity to kind of talk with your children. Yeah. Yeah. conversation, and we are lucky because they have to decide among them which sort of level of authority each has. We're sort of worried about it. Should our son or our daughter or both have authority over checking accounts? Should they be the second? Who should be on the How are her father's attorneys? First and second, do we're gonna create competition between each other? We're lucky in part because she's in the medical field and doesn't know her schedule and she's further away. And so our son is A, one, a lawyer, and B, he's nearby. So that has worked out. We've we've seen other families where that becomes issues. So we know how lucky we are. And of course, my wife is first, but I don't own anything anymore. It's all my wife's trust. And again, then the disposition is there with our children, but it could have been to them too. in my son is second. Going through that in some ways is one of the most important things when you get a Cognivir. dementia because it's mild, mildly cognitively paired with dementia. I'm early stage. I've seen enough and believe enough that things can change in a moment. And I can do as smart as I think I am. I can make stupid mistakes and not stupid, but mistakes that are caused by the disease and they can cost our kids and our family a ton. Right. grandchildren are a little more cautious with me. I sometimes, well, they're a little bit tentative and I love that my grandson who's just started nutrition college just calls to talk to me. He didn't do that when he was away or before the diagnosis. And all the grandchildren are one that spend time. So now we've got a generation below the sandwich generation. But our children, was it because they went to it with my wife? I don't know. They seem to be, they're very busy people, and they live near us. don't know what, I think there's such value in being nearby and being, we don't hide anything from them. So they're aware and I think, it occurs to me that if one knows more than the other and then they complain and one's, Spidey, you know, doesn't have time. are so, so far, I don't take anything for granted, so far so lucky with that. they are deeply, you know, when I do the play, it is not just the couple of the family, those with the disease, but their children. That's it. that are there, that are affected, in some ways affected more. There's also a situation. One of the advocacy pieces of my play is that I reject the idea, one of its main features is accompanied suicide. I can live a meaningful life and I should because I want something about my own ultimate death too to contribute to the science going forward. There are people who believe that their illness will suck the resources out of the next generations and our kids haven't needed to feel that. They've done really well financially and they're secure. But you would like to live. leave something to them as well. The cost of the disease is huge. And it can rob a family or us from anything for our children. And then may, you know, we should be able, a state attorney said, we have enough resources. We should be able to be independent since I have to live with them or. count on them for their resources. But I've heard of, I've read an obituary of somebody I know who decided to go to Switzerland because he didn't want to be too much of a burden for his family. And... a lot from older adults that they're more afraid of being a burden to their family than the disease itself in some sense. Yeah. I sort of interpret that financial. I could be wrong. It's both financial and kind of physical, emotional. Just the... live in their house and if they had to put up with you and rob them of opportunities to do things. And we're lucky so far. We're looking for independent living for ourselves and we can afford it at this time. We don't know if we're going to have to, but these are, we're trying to, but these are so important. set of issues, isn't just Susan, it isn't just me. It is... for your whole family. I have to, for our children, now I have to say I do leverage my son a little bit because he's a senior legislature in Virginia. And I'm not really happy with Microsoft these days because they're putting out new products that those of us with cognitive impairments have a harder time. I, I, I, I'm going to just tell you that I made my son ask him. who uses influence to get me in touch with that Microsoft Disability Office. And I got some special treatment, but okay. my goodness, Sam, you're not making it. You're making people very jealous of your situation right now. But I do want to go back to the driving because that's a common issue, especially for older men in terms of, you know, driving safety, just a discussion of stopping driving or even kind of safety related checks in place. Tell us how did that play out for you and your family? It is playing out. Mm-hmm. My, should have done it earlier, but in Virginia, there's this requirement with the diagnosis that you go to a vocational rehabilitation location and be tested. I had, because we switched, you know, our first neurologist experience was so difficult, we went instead to somebody new. He didn't think I was that bad, but I didn't want to risk it. Right. One, didn't want to inadvertently get in an accident. And two, to selfishly, I knew that even if I was in an accident and I might not have been involved, the fact that I had Alzheimer's could risk our resources and maybe even make it seem like I was at fault. So I did get, I chose to. Be examined and I got my doctor did a prescription. So this is a prescription thing. Interestingly, they do a prescription for examination, the vocational rehabilitation and I hadn't thought about it. They do this a lot. There are people who lose an arm or can't walk well and. And so they first of they test my cognition independent of the neurologist, which surprised me and then. I go out with a driver and I can drive her out again because they have their, I didn't know this as it was happening until she told me the driver, the person in the car, she said, I had to hit my brakes twice. She said, you had brakes? So she made me take it again. And she gave me an okay with the qualification that I have somebody in the car with me, not to drive very far distances by myself. driving in the testing car with her own brakes. Okay. I didn't realize that she had her own pedals. Yeah, and it may have been the level of anxiety, I don't know, but I did it twice. So we have only one car now. It was not like, let's get rid of it. was one of the cars died and... We said, let's make it work with one that way we're most likely to be together. And so right now. sense of independence or how you feel about yourself? You know, I'm not that kind of guy. I I don't want to be critical of others. I see it. I've heard it. I know people who I've heard other men say they're angry and frustrated. You know, it happened in an era of Zoom. And so we can interconnect. There is this other issue, though, that's almost related. And that is I don't call it loneliness, what's the word, don't know, but needing more, not being, isolation, that's the word I was thinking. Social isolation, it's a challenge because you drive as much. I think a lot of the people we know don't know how to be around, they're worried or not comfortable being around, not sure. There's a stigma. Yeah. to be, it's a stigma of sorts, it's just there, I can come in. So as a result, we feel isolated. That's why we are looking at senior living for ourselves. We're not there yet wanting to do it yet though the demand in our region is huge. One of the places we would consider that they had a 900 person waiting list. that would take forever. That would take forever. But well, they have ways to, they ask, have you put a little bit more money down that place? There are others we're looking at. We haven't put our name down on one, but we have a separate room. Our basement area has a guest room. There's also an adult daycare near us. So we're looking at those options. I know I'm talking to me. It's interesting, people see me and will have this conversation, you're fine. Well, they don't know what goes on behind. And even for our kids, they don't always say it. But then you get appointments, this whole issue of... You know, forget where your keys are. Everybody says, I do that too. What I learned and somebody told us is, yeah, your wife might forget where her keys are, but she can trace her steps. I can't. I don't know where I was earlier that day or where they might be. But those are small things. The driving, getting lost, not being sure where you are, not recognizing the streets. Traveling is very difficult. used to travel all the time. In fact, I used to work half time in New York City, so I'd commute every other week. When we fly and go to performances, we have to leave a day early. I'm a big advocate, by the way, in my show for some changes. One is, want, know, Susan is, I give her a name, she's my cognitive navigator. That is her role in life. And it's... But she, no, it's so, I mean, in play, she sits in the front row with a script. I have my script, getting through airports, dealing with what used to be familiar routine and now is, you know, every trip is new. People don't understand that. Yeah, I've seen the line before, but where is it and how am I supposed to do it? And... So it's helpful and our kids are great. If they can be there and be at something, I think we see, we have one grandchild still in sports that we should be seeing more of their stuff, but our grandkids are older. So we're lucky in that way, but it is our children, right? have the biggest, in many ways, biggest stake in our own, you know, they have to know, well, they need to all of sudden be in charge. Susan could do some, but she'll need the help. And we're lucky because we have two really great children who have the ability and training and resources to give help. back to Susan for a bit, because she's your cognitive navigator and that you are not only, you know, doing the play, but you're also traveling a decent amount in terms of going to different cities. What I'm just curious, what's the, what's your mindset behind, you know, traveling and kind of pushing yourself perhaps outside of your daily comfort zones compared to say other people who are staying home or say, well, I'm not gonna travel, I'm not gonna change my routine. I'm just curious how you thought about this. Well, we've come to the conclusion and she's been helpful. mean, that it's good for what I'm doing is good for me. And there we believe that my decline has been slower because it gives me meaning and purpose. And I think the you know, I've had audience members tell me I can still remember one. I almost say it was like one of my first. plays where somebody, you know, we have a question and answer discussion. The woman said her husband came home from getting the diagnosis, went into this bedroom and never came out. Now that was a figurative speech. He became deeply depressed. He didn't go back to work. He quit things. And that isn't, I mean, you can understand it. And... the need to be involved in things that give us meaning. Susan, during her diagnosis, she's, first of all, I'm lucky for another reason. She spent 14 years working in a senior living center. She was director of marketing and admissions at a senior living with a memory center. So she spent times marketing to people who had a spouse or somebody with. memory problems, and she was familiar. in some ways we're very lucky. And I'm glad you're talking to people who are lucky. Not everybody goes in, like I don't want to say it that way, because they go into the ditch. There are a wide array of experiences as there are people. And so. She had a certificate in gerontology and worked 14 years in an assisted living that had a memory center. So it's been helpful to her in how to deal with me. She needs, like everybody else, I'm good with it to be able to get her time off. The most serious thing that we've experienced, if you want that. is one of my experiences is agitation. One of my symptoms is agitation. And I remember the moment where I'm not mad at her, I'm mad at myself, right? I can't figure it out. It's never gonna be, yeah. But that hit her. Now, I knew it was an accident, but she wasn't sure. And so we had to talk to, Susan wanted to talk to a social worker. And she pressed me, we had to do it. We did it over Zoom. And she could tell the social worker, she couldn't say it directly to me. And even though was on Zoom, we gave her a sense of some safety. She said she was afraid that I might hurt her one day. It was so important for me to hear that and to be aware of that. so develop a plan. If I became agitated or physical, what to do and who to call. And I'm more aware of that, even though the explosions can't stop them. I'm very aware of not trying to... physically flounder, you know, and if she sees it, she knows to step back a little bit. Not that I would go after her, but again, I don't think we're, I'm not from Mars. I hope every family that sees this and begins to sense that is a risk that they know how to handle it. I'm lucky both in the fact that I can do this play at all. and then doing it in senior living centers and like, that I can learn from them just being there and hearing and seeing how they work. And it's useful for me. And Susan is trained. So I've got to train a person who worked at a senior living facility being as my significant, as my wife, as my cognitive neighbor and love partner. We all. We all have those dual, and this is important, think, I said it before, think, but we these dual roles. She cares for more, she gives me care, she's my cognitive navigator, but there's the emotional side of seeing me change. Because I'm going to be someone else eventually, unless some other cause of death. But this disease is progressive, and at some point, There'll be a different person in this body. Not a different thing, by the way. That's why I hate the word dementia. I wrote a poem, I do some poetry, and the poem is, wonder what the Sam of me then will know about the Sam of me now. I mean, it's bad. That's why I hate the word dementia. This disease progression. When you can't change, can't, I can't undo it. I can't go around being why me? poor Sam. Because I can't change it. It is what it is. I can live it as best as I can. And that's not easy. But if I'm doing it as if I've been punished by God or I, or for any other reason, and it's unfair to me and... It is what it is, but what I can choose to do is to try to live it the best that I can with purpose and gifts that I might give to others. And I also think that my wife and I, Susan, are blessed to have each other. And we work really, really hard. And this is, I would hope, if there's a message for any families out there, you can't change it. You can only accept it. techniques, the yes ending. There's a well-known person in this field, Tepa Snow. don't know if... Kind of the improv method of, you know, yes and, yeah. it's, and I've been trained in that. My theatrical work started with theatrical improv. And know, Susan and I joked that she's the no woman and I need to change that in her. But it's an instinct. No, you can't. No, we can't. No, we can't. Yes, we can do that. And the and is finding a way around the impossibility. Right, right. But it's helped with our kids too, and they've seen it. So we're lucky that way. But it is a dramatic effect on their lives. They're wherever they're available. We go to our son for all sorts of legal or help on things like that. And our daughter will call and ask medical questions. that she's not, she'll tell us that's not my field sometimes, but she can give us guidance. Yeah. Yeah. It's a pediatric dentist. the other other age spectrum, right? but yeah, I think, you know, I think it's been amazing to kind of see an example of someone who, like you, who, who have chosen to be proactive and to continue to use this experience and this diagnosis to make meaning and to interact with other people because most people, fact, unconsciously choose the opposite, which is to withdraw. And it's easy. look, as I tell people, a lot of people want to anything. They don't want people to know I'm... The reactions are often, my God, that's so terrible. I'm so sorry. know, if anybody's listening, the right answer is, I'm sorry to have that. Anything I can do, or is there something that, you know, how's it going? Rather than, that's so terrible, you're gonna die, you poor thing. Right. You don't want people's pity. mean, nobody wants people's pity, but I am curious as to what you think, in what way you have changed since getting the diagnosis. There's a little bit of a greater urgency in my life. That's a one. You know, I'm accepting. There's a phrase in Judaism, I don't know if it's Hebrew, it's Yiddish. It's part of Passover, Passover's coming up. The word's dienu, I don't know if you've heard it. Dienu, there's even a song, and it means it would be enough. If this were my last day, dienu, it would have been enough. I live in gratitude. I'm lucky. You know, we come from both from very modest families. didn't, you know, we worked our way up. We've done it well. Maybe because on our first anniversary marriage. Her mother died two weeks before our anniversary. My father died two weeks after. my goodness. We've had, we both, I've lost a sister, she lost, you know, we are so grateful for each other. And I want to give a shout out to one other person in my life. It's secret girlfriend. No, it's not. It's my, I call her my girlfriend. She's not living now. She passed away. Her name is Lynn Fielder. And I was on the board of directors at the World Institute on Disability. So I worked in that field. Lynn was on the board with me. We met back then. Lynn at was diagnosed with Parkinson's. And we became really close friends. she had me, in fact, the day I met her, for some reason she insisted we have lives. And she said, I'm not poor Lynn with Parkinson's, poor me. I am Lynn Fielder with Parkinson's and I'll be the best of that the world has ever seen. Know what I learned from Lynn? I am Sam Simon. with Alzheimer's disease and I will be the best of that the world has ever seen. And I, it was a new concept of embracing your life and you with what you are and has come. Yes, we can work on things like our jobs and things with what we have, but we can't, there things we can't change. And we'll be, and we don't, I don't separate the Alzheimer's from myself. I don't, I can't. But I embrace, so I embrace it. And so that is the life I'm living. And it's not, don't wanna say it's been easy, maybe because Susan, we went through with Susan and other things, maybe because I've been trained in improv and have worked in the disability world for some reason, I happen to think, and I've worked at the top levels of the American disability movement with some of that. founders and most. impactful people. And I don't understand. I didn't understand. I often wondered why were they doing that? Maybe I was getting ready. That sounds woo woo like. No, no, I mean, I think your life experience has definitely shaped how you've taken this disease and really turned it into advocacy and meaning making. And whatever we, I think, anyway, I don't want to judge anybody. I hope people can, if anything, this might help that they can reimagine their journey, embrace it. And yes, family, is in some ways all about that. I am aware that not every family is as lucky as we are. We are not dysfunctional. How's that friend negative? you? That's great. big fights and there's no big separate, that side of the family, we're lucky. And we've seen the opposite. Right. So I'm curious in terms of, and this is our sort of my final question for you is, you know, what would you, What would you want to tell to say perhaps the adult children who are listening now, who might be, you know, watching their older parents have the same memory problems that that you're experiencing? What would you like to tell them? Love them, hard stop. You know, I've come to believe that our ability sues the mind. And I don't think this is just for us. It would be the same with children, the ultimate act of love. I mean, in a really deep meaning of the word, is to be there for someone in your life, a parent. spouse but a parent as they are about to take their last breath and let them know their love. You're holding a gift. beyond value, an unimaginable gift to let that older person in your life know that you love them and have always loved them and that they feel your love as they take their last breath. You know, if they've turned into an agitated and angry person, you still love them. And I think that would be my advice. And the gift back to you from that act is you've been able to show that and give that gift. So hopefully they'll allow you, we'll take it. And it is an act, it's act of love, the expression of love, being there when you need to be. It doesn't mean you have to go broke. It doesn't mean you should put yourself in danger. No, these are real questions. People, it doesn't mean, you know, again, they're ethical things that if you're in a relationship, if my children ever, if I were in their house and they felt I could hurt them, they don't have an ethical obligation. to keep me in their home. They do have an obligation to see that I'm taken care of, but they don't put yourself in danger. But I don't think that's what we're really talking about. I think it is that act of love. I think this is the first time that I've had a guest make me cry. But the reason why I wanted to explain, you know, my own emotions is that... my mom passed last year from cancer, from ovarian cancer. And I mean, I think she, her passing is a big reason why, this particular podcast has been sort of reframed in the, in the, in terms of its target audience into, you know, sandwich generation folks, because I was one. And I just think what you said earlier in terms of sharing that love and I was there, I'm not for her final moment, because I'm pretty sure she waited until I left before she passed with just my father present. But... I think, you know, at the end it's just love that matters. And absolutely. And for that generation, again, I do want to say that this disease makes it hard sometimes. Because their parent may have become someone else, at least externally. They were never, but they're always who they were in your memory and for what they did. And they represent that, if nothing else. I hope it doesn't ever get to exactly that point. but you can still feel and see that in them. so, I mean, it's like I said, it's hard stop. There is, I've learned that it's a lesson hard learned and over time. So maybe it's a gift of people and particularly young people can hear that. And by the way, they're not so young. You know, that's how a general, my kids are in their fifties, right? right. Or 60s or 60s. Yeah. Susan and I were in some ways, at least we both lost our parents when we were young. Yeah. And even then, you know... And we're not going to go back over that. I still love this conversation. No. thank you so much, Sam. Thank you for joining me. And I think for those who are listening, if this episode has moved you like it has certainly moved me, please share this episode with those that you love. And we will see you next time. Bye. and dementia.