April 22, 2025
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/
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Video on Ask Dr. Mia YouTube channel
Transcripts on www.miayangmd.com. Transcripts are automatically generated and may contain minor inaccuracies.
Email: ask@miayangmd.com
Opinions expressed are exclusive of Dr. Mia Yang and not reflective of her or guest speaker's employers or funders.
WEBVTT
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Welcome back to ask Dr.
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Mia podcast.
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Today I have a special guest with me, Sam Simon.
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Sam has been a lawyer for a long time and he's also a playwright.
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This is his, as he defines it, his fourth age.
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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.
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And since then he has produced his own play called Dementia Man.
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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.
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So welcome to the podcast, Sam.
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Thank you very, very much for having me.
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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.
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Absolutely.
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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.
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But can you maybe share with us kind of how what you had talked about with your children?
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around that time or since then in terms of your own memory problems.
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Well, sure.
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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.
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59 years.
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We're going to be 60 years in August 23rd, 2025.
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And I have two adult children.
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Our son, his name is Marcus.
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Same name as my father.
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And they live nearby.
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Our son lives at Five Minute Drive away.
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He's a lawyer.
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He's also a public official, by the way.
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He's a member of the Virginia legislature.
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And he's 26 in seniority out of 100.
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Yikes.
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Anyway, so he's been doing that for the last decade.
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He's also has a law practice.
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Our daughter.
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Rachel, so my son's name, Rachel, named after her grandmother, Rose, is a pediatric dentist.
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One's a lawyer, the other's gotta be a doc.
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No, it's easy.
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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.
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And we have four grandchildren.
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Each of our children have two children.
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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.
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Or just time pass fast.
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So yeah, I don't know if they noticed the earlier symptoms.
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I didn't necessarily notice them as being distinct.
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I owned my own company for a long time.
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I was successful in my business.
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I had sold the company.
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Our big first family deal with health challenges was when my wife, Susan, was fine now, went through advanced breast cancer.
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And there was a time when the doctors pulled me aside and said, get ready.
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A lot of things happened.
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My son was in the Army at the time.
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They were scheduled to go to Korea.
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They got a compassionate change of orders to live nearby and be here.
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My daughter was in dental school at the time.
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And I was her care partner.
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I've learned, and she's an unlikely survivor.
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Very thankful for that.
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Very unusual now that the roles are changed.
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And so we're a family where that happened.
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And it's so different because in part, you have, mine's not moving that fast.
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It's not like from uh-oh to And I don't have a cure option.
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Citizen dead and is unlikely survivor.
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So the first thing we had to do, this happened in two phases.
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I was first diagnosed with mild cognitive impairment.
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So I knew something was going on, riding, driving along wrong side of the road.
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I get lost.
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I would occasionally lose what I call cognitive awareness.
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It is I would...
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One without my wife, one with, I would just say, where are we?
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I just didn't know.
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All of a nothing was familiar.
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And it didn't last too, too long, but something was going on.
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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.
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But when we told them, they of course said, you know, how can we help?
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What do want to do?
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We didn't take drastic actions.
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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.
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It's a gold standard, right, that I'm tested against everybody who's just like me.
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And I did poorly.
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Five hour long test.
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And went through that.
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but then.
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We were lucky we finally got the ability.
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We went to Georgetown University here, hospital.
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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.
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I had to have a PET scan with contrast, at three to $5,000 a piece.
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But now I'm nominated for a drug trial and the sponsors of the trial paid for it.
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Sure enough, I'm what's called amyloid positive.
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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.
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And by the way, I had never been, had to have a terminal diagnosis delivered to me.
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I've empathized with you doctors.
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It's hard for doctors as well as a patient.
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Our neurologist wouldn't look up.
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He was looking down at the piece of paper.
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He sort of mumbled.
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said, think we're at a new diagnosis, and he sort of mumbles.
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At any rate, so we had to tell our kids.
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That was, and.
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I'm curious, what was their reaction when you told them?
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Well, it was loving.
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How can we help?
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We wanted it.
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They each wanted it.
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They're both very busy professionally and engaged, so they need to make their own arrangements, come have a meal together.
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We're Jewish and we're very involved in our synagogue, and so they actually wanted to come to services with us after it.
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It's a religious moment.
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you you've got an existential moment.
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so they're loving and they're caring.
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And I'm trying to remember who told us the first time to do the first thing you need to do.
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And who was it?
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Maybe it was our accountant.
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Maybe it was our son.
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So our son's now a lawyer.
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He's got a practice.
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In Virginia, you're not a full-time legislator.
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He's a practice.
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It's a real estate law.
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But I don't think it was him.
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Somebody told us, you need to see your estate lawyer, which was not obvious to us.
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Now you didn't hear that from your doctors.
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No.
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And the estate lawyer said, we're going to have to go through all your financial stuff.
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I think it all ought to be in the name of your wife or your children.
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You need to rearrange who's second.
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you know, second, we need to meet with your children.
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So I think that was the most dramatic moment for everybody.
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It makes it more real in some ways.
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So we get a lot of work done and things.
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And it's a practical kind of thing.
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We meet in his office.
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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.
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And he wrote this gigantic check for somebody in fraud.
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I still think I would never do that, but I don't know, right?
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hard for the person with dementia to know what they don't know, right?
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What they don't remember.
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how it'll affect me.
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So the kids have to hear this too.
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So we're lucky, they're very mature.
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We are fortunate.
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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.
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Anyway.
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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.
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Yeah.
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Yeah.
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conversation, and we are lucky because they have to decide among them which sort of level of authority each has.
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We're sort of worried about it.
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Should our son or our daughter or both have authority over checking accounts?
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Should they be the second?
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Who should be on the How are her father's attorneys?
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First and second, do we're gonna create competition between each other?
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We're lucky in part because she's in the medical field and doesn't know her schedule and she's further away.
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And so our son is A, one, a lawyer, and B, he's nearby.
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So that has worked out.
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We've we've seen other families where that becomes issues.
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So we know how lucky we are.
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And of course, my wife is first, but I don't own anything anymore.
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It's all my wife's trust.
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And again, then the disposition is there with our children, but it could have been to them too.
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in my son is second.
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Going through that in some ways is one of the most important things when you get a Cognivir.
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dementia because it's mild, mildly cognitively paired with dementia.
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I'm early stage.
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I've seen enough and believe enough that things can change in a moment.
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And I can do as smart as I think I am.
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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.
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Right.
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grandchildren are a little more cautious with me.
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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.
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He didn't do that when he was away or before the diagnosis.
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And all the grandchildren are one that spend time.
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So now we've got a generation below the sandwich generation.
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But our children, was it because they went to it with my wife?
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I don't know.
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They seem to be, they're very busy people, and they live near us.
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don't know what, I think there's such value in being nearby and being, we don't hide anything from them.
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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.
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are so, so far, I don't take anything for granted, so far so lucky with that.
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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.
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That's it.
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that are there, that are affected, in some ways affected more.
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There's also a situation.
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One of the advocacy pieces of my play is that I reject the idea, one of its main features is accompanied suicide.
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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.
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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.
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They've done really well financially and they're secure.
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But you would like to live.
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leave something to them as well.
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The cost of the disease is huge.
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And it can rob a family or us from anything for our children.
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And then may, you know, we should be able, a state attorney said, we have enough resources.
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We should be able to be independent since I have to live with them or.
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count on them for their resources.
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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.
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And...
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a lot from older adults that they're more afraid of being a burden to their family than the disease itself in some sense.
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Yeah.
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I sort of interpret that financial.
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I could be wrong.
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It's both financial and kind of physical, emotional.
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Just the...
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live in their house and if they had to put up with you and rob them of opportunities to do things.
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And we're lucky so far.
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We're looking for independent living for ourselves and we can afford it at this time.
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We don't know if we're going to have to, but these are, we're trying to, but these are so important.
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set of issues, isn't just Susan, it isn't just me.
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It is...
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for your whole family.
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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.
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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.
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I, I, I, I'm going to just tell you that I made my son ask him.
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who uses influence to get me in touch with that Microsoft Disability Office.
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And I got some special treatment, but okay.
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my goodness, Sam, you're not making it.
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You're making people very jealous of your situation right now.
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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.
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Tell us how did that play out for you and your family?
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It is playing out.
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Mm-hmm.
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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.
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I had, because we switched, you know, our first neurologist experience was so difficult, we went instead to somebody new.
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He didn't think I was that bad, but I didn't want to risk it.
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Right.
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One, didn't want to inadvertently get in an accident.
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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.
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So I did get, I chose to.
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Be examined and I got my doctor did a prescription.
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So this is a prescription thing.
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Interestingly, they do a prescription for examination, the vocational rehabilitation and I hadn't thought about it.
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They do this a lot.
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There are people who lose an arm or can't walk well and.
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And so they first of they test my cognition independent of the neurologist, which surprised me and then.
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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.
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She said, you had brakes?
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So she made me take it again.
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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.
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driving in the testing car with her own brakes.
00:20:13.494 --> 00:20:14.165
Okay.
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I didn't realize that she had her own pedals.
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Yeah, and it may have been the level of anxiety, I don't know, but I did it twice.
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So we have only one car now.
00:20:32.286 --> 00:20:35.746
It was not like, let's get rid of it.
00:20:35.746 --> 00:20:39.182
was one of the cars died and...
00:20:39.182 --> 00:20:43.862
We said, let's make it work with one that way we're most likely to be together.
00:20:45.122 --> 00:20:48.056
And so right now.
00:20:48.056 --> 00:20:52.240
sense of independence or how you feel about yourself?
00:20:52.781 --> 00:20:55.102
You know, I'm not that kind of guy.
00:20:55.102 --> 00:20:57.102
I I don't want to be critical of others.
00:20:57.102 --> 00:20:57.882
I see it.
00:20:57.882 --> 00:20:59.041
I've heard it.
00:20:59.041 --> 00:21:05.382
I know people who I've heard other men say they're angry and frustrated.
00:21:06.801 --> 00:21:10.142
You know, it happened in an era of Zoom.
00:21:10.481 --> 00:21:12.582
And so we can interconnect.
00:21:12.721 --> 00:21:16.362
There is this other issue, though, that's almost related.
00:21:16.721 --> 00:21:32.986
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.
00:21:33.292 --> 00:21:38.996
Social isolation, it's a challenge because you drive as much.
00:21:40.797 --> 00:21:48.800
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.
00:21:48.978 --> 00:21:50.394
There's a stigma.
00:21:50.394 --> 00:21:50.801
Yeah.
00:21:50.801 --> 00:21:54.801
to be, it's a stigma of sorts, it's just there, I can come in.
00:21:54.801 --> 00:21:58.261
So as a result, we feel isolated.
00:21:58.261 --> 00:22:01.582
That's why we are looking at senior living for ourselves.
00:22:03.541 --> 00:22:09.682
We're not there yet wanting to do it yet though the demand in our region is huge.
00:22:09.821 --> 00:22:15.382
One of the places we would consider that they had a 900 person waiting list.
00:22:15.636 --> 00:22:16.730
that would take forever.
00:22:16.730 --> 00:22:19.074
That would take forever.
00:22:19.074 --> 00:22:25.877
But well, they have ways to, they ask, have you put a little bit more money down that place?
00:22:25.877 --> 00:22:28.046
There are others we're looking at.
00:22:28.046 --> 00:22:33.011
We haven't put our name down on one, but we have a separate room.
00:22:33.011 --> 00:22:35.962
Our basement area has a guest room.
00:22:36.605 --> 00:22:39.506
There's also an adult daycare near us.
00:22:40.906 --> 00:22:44.269
So we're looking at those options.
00:22:44.269 --> 00:22:45.869
I know I'm talking to me.
00:22:46.604 --> 00:22:51.006
It's interesting, people see me and will have this conversation, you're fine.
00:22:51.006 --> 00:22:53.457
Well, they don't know what goes on behind.
00:22:53.758 --> 00:22:56.719
And even for our kids, they don't always say it.
00:22:56.719 --> 00:23:02.261
But then you get appointments, this whole issue of...
00:23:04.844 --> 00:23:07.335
You know, forget where your keys are.
00:23:08.273 --> 00:23:10.137
Everybody says, I do that too.
00:23:10.298 --> 00:23:18.784
What I learned and somebody told us is, yeah, your wife might forget where her keys are, but she can trace her steps.
00:23:18.865 --> 00:23:19.984
I can't.
00:23:20.625 --> 00:23:24.087
I don't know where I was earlier that day or where they might be.
00:23:24.147 --> 00:23:25.449
But those are small things.
00:23:25.449 --> 00:23:30.932
The driving, getting lost, not being sure where you are, not recognizing the streets.
00:23:32.397 --> 00:23:34.518
Traveling is very difficult.
00:23:34.518 --> 00:23:35.698
used to travel all the time.
00:23:35.698 --> 00:23:40.698
In fact, I used to work half time in New York City, so I'd commute every other week.
00:23:41.417 --> 00:23:46.178
When we fly and go to performances, we have to leave a day early.
00:23:47.298 --> 00:23:50.897
I'm a big advocate, by the way, in my show for some changes.
00:23:51.137 --> 00:23:56.298
One is, want, know, Susan is, I give her a name, she's my cognitive navigator.
00:23:56.397 --> 00:23:58.317
That is her role in life.
00:23:58.337 --> 00:24:00.518
And it's...
00:24:00.526 --> 00:24:06.865
But she, no, it's so, I mean, in play, she sits in the front row with a script.
00:24:06.865 --> 00:24:18.105
I have my script, getting through airports, dealing with what used to be familiar routine and now is, you know, every trip is new.
00:24:18.105 --> 00:24:20.026
People don't understand that.
00:24:20.405 --> 00:24:24.865
Yeah, I've seen the line before, but where is it and how am I supposed to do it?
00:24:25.445 --> 00:24:26.438
And...
00:24:27.000 --> 00:24:31.173
So it's helpful and our kids are great.
00:24:31.173 --> 00:24:47.962
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.
00:24:47.962 --> 00:24:53.625
So we're lucky in that way, but it is our children, right?
00:24:53.738 --> 00:25:03.444
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.
00:25:03.786 --> 00:25:06.768
Susan could do some, but she'll need the help.
00:25:06.768 --> 00:25:15.015
And we're lucky because we have two really great children who have the ability and training and resources to give help.
00:25:15.015 --> 00:25:28.211
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.
00:25:28.211 --> 00:25:51.919
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.
00:25:51.919 --> 00:25:54.803
I'm just curious how you thought about this.
00:25:55.905 --> 00:25:59.067
Well, we've come to the conclusion and she's been helpful.
00:25:59.067 --> 00:26:04.352
mean, that it's good for what I'm doing is good for me.
00:26:04.852 --> 00:26:13.337
And there we believe that my decline has been slower because it gives me meaning and purpose.
00:26:14.278 --> 00:26:21.723
And I think the you know, I've had audience members tell me I can still remember one.
00:26:21.723 --> 00:26:24.566
I almost say it was like one of my first.
00:26:25.453 --> 00:26:30.105
plays where somebody, you know, we have a question and answer discussion.
00:26:30.105 --> 00:26:37.077
The woman said her husband came home from getting the diagnosis, went into this bedroom and never came out.
00:26:37.077 --> 00:26:40.038
Now that was a figurative speech.
00:26:40.038 --> 00:26:41.458
He became deeply depressed.
00:26:41.458 --> 00:26:42.558
He didn't go back to work.
00:26:42.558 --> 00:26:43.819
He quit things.
00:26:43.819 --> 00:26:49.141
And that isn't, I mean, you can understand it.
00:26:50.082 --> 00:26:50.862
And...
00:26:52.748 --> 00:26:56.039
the need to be involved in things that give us meaning.
00:26:57.582 --> 00:27:04.126
Susan, during her diagnosis, she's, first of all, I'm lucky for another reason.
00:27:04.347 --> 00:27:08.570
She spent 14 years working in a senior living center.
00:27:08.570 --> 00:27:16.377
She was director of marketing and admissions at a senior living with a memory center.
00:27:16.377 --> 00:27:21.614
So she spent times marketing to people who had a spouse or somebody with.
00:27:21.614 --> 00:27:24.894
memory problems, and she was familiar.
00:27:25.094 --> 00:27:27.314
in some ways we're very lucky.
00:27:27.314 --> 00:27:29.554
And I'm glad you're talking to people who are lucky.
00:27:29.554 --> 00:27:34.814
Not everybody goes in, like I don't want to say it that way, because they go into the ditch.
00:27:35.394 --> 00:27:43.413
There are a wide array of experiences as there are people.
00:27:43.513 --> 00:27:45.102
And so.
00:27:45.102 --> 00:27:54.781
She had a certificate in gerontology and worked 14 years in an assisted living that had a memory center.
00:27:54.801 --> 00:28:00.182
So it's been helpful to her in how to deal with me.
00:28:00.281 --> 00:28:07.541
She needs, like everybody else, I'm good with it to be able to get her time off.
00:28:07.781 --> 00:28:11.582
The most serious thing that we've experienced, if you want that.
00:28:11.821 --> 00:28:14.541
is one of my experiences is agitation.
00:28:14.541 --> 00:28:17.801
One of my symptoms is agitation.
00:28:18.201 --> 00:28:23.501
And I remember the moment where I'm not mad at her, I'm mad at myself, right?
00:28:23.501 --> 00:28:24.602
I can't figure it out.
00:28:24.602 --> 00:28:26.241
It's never gonna be, yeah.
00:28:26.321 --> 00:28:28.198
But that hit her.
00:28:30.190 --> 00:28:34.170
Now, I knew it was an accident, but she wasn't sure.
00:28:35.210 --> 00:28:41.109
And so we had to talk to, Susan wanted to talk to a social worker.
00:28:41.509 --> 00:28:43.990
And she pressed me, we had to do it.
00:28:43.990 --> 00:28:45.809
We did it over Zoom.
00:28:46.109 --> 00:28:50.750
And she could tell the social worker, she couldn't say it directly to me.
00:28:50.750 --> 00:28:54.210
And even though was on Zoom, we gave her a sense of some safety.
00:28:54.329 --> 00:28:58.069
She said she was afraid that I might hurt her one day.
00:28:59.970 --> 00:29:07.576
It was so important for me to hear that and to be aware of that.
00:29:07.576 --> 00:29:10.519
so develop a plan.
00:29:10.519 --> 00:29:17.144
If I became agitated or physical, what to do and who to call.
00:29:17.664 --> 00:29:26.172
And I'm more aware of that, even though the explosions can't stop them.
00:29:26.172 --> 00:29:28.913
I'm very aware of not trying to...
00:29:28.961 --> 00:29:36.903
physically flounder, you know, and if she sees it, she knows to step back a little bit.
00:29:36.903 --> 00:29:42.986
Not that I would go after her, but again, I don't think we're, I'm not from Mars.
00:29:42.986 --> 00:29:52.489
I hope every family that sees this and begins to sense that is a risk that they know how to handle it.
00:29:52.489 --> 00:29:57.170
I'm lucky both in the fact that I can do this play at all.
00:29:57.185 --> 00:30:04.357
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.
00:30:04.357 --> 00:30:07.169
And it's useful for me.
00:30:07.169 --> 00:30:09.750
And Susan is trained.
00:30:10.109 --> 00:30:21.773
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.
00:30:21.773 --> 00:30:22.814
We all.
00:30:23.074 --> 00:30:30.038
We all have those dual, and this is important, think, I said it before, think, but we these dual roles.
00:30:31.300 --> 00:30:40.548
She cares for more, she gives me care, she's my cognitive navigator, but there's the emotional side of seeing me change.
00:30:41.048 --> 00:30:47.954
Because I'm going to be someone else eventually, unless some other cause of death.
00:30:47.954 --> 00:30:56.190
But this disease is progressive, and at some point, There'll be a different person in this body.
00:30:56.289 --> 00:30:58.849
Not a different thing, by the way.
00:30:58.990 --> 00:31:01.230
That's why I hate the word dementia.
00:31:03.049 --> 00:31:11.569
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.
00:31:12.089 --> 00:31:14.250
I mean, it's bad.
00:31:14.250 --> 00:31:15.650
That's why I hate the word dementia.
00:31:15.650 --> 00:31:18.049
This disease progression.
00:31:20.440 --> 00:31:23.381
When you can't change, can't, I can't undo it.
00:31:23.381 --> 00:31:26.250
I can't go around being why me?
00:31:26.281 --> 00:31:27.571
poor Sam.
00:31:27.571 --> 00:31:28.872
Because I can't change it.
00:31:28.872 --> 00:31:30.613
It is what it is.
00:31:30.613 --> 00:31:33.344
I can live it as best as I can.
00:31:33.344 --> 00:31:36.574
And that's not easy.
00:31:36.634 --> 00:31:48.718
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...
00:31:49.471 --> 00:31:59.288
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.
00:31:59.388 --> 00:32:04.863
And I also think that my wife and I, Susan, are blessed to have each other.
00:32:04.863 --> 00:32:08.204
And we work really, really hard.
00:32:08.204 --> 00:32:16.559
And this is, I would hope, if there's a message for any families out there, you can't change it.
00:32:18.374 --> 00:32:19.615
You can only accept it.
00:32:19.615 --> 00:32:23.218
techniques, the yes ending.
00:32:23.218 --> 00:32:28.894
There's a well-known person in this field, Tepa Snow.
00:32:28.894 --> 00:32:30.859
don't know if...
00:32:30.859 --> 00:32:34.953
Kind of the improv method of, you know, yes and, yeah.
00:32:34.953 --> 00:32:37.066
it's, and I've been trained in that.
00:32:37.066 --> 00:32:40.858
My theatrical work started with theatrical improv.
00:32:41.380 --> 00:32:46.805
And know, Susan and I joked that she's the no woman and I need to change that in her.
00:32:46.805 --> 00:32:48.935
But it's an instinct.
00:32:48.935 --> 00:32:49.527
No, you can't.
00:32:49.527 --> 00:32:50.146
No, we can't.
00:32:50.146 --> 00:32:51.327
No, we can't.
00:32:51.469 --> 00:32:52.730
Yes, we can do that.
00:32:52.730 --> 00:32:57.292
And the and is finding a way around the impossibility.
00:32:57.317 --> 00:32:58.880
Right, right.
00:32:59.137 --> 00:33:02.598
But it's helped with our kids too, and they've seen it.
00:33:02.598 --> 00:33:04.858
So we're lucky that way.
00:33:05.720 --> 00:33:13.061
But it is a dramatic effect on their lives.
00:33:14.561 --> 00:33:16.742
They're wherever they're available.
00:33:18.323 --> 00:33:22.374
We go to our son for all sorts of legal or help on things like that.
00:33:22.374 --> 00:33:28.299
And our daughter will call and ask medical questions.
00:33:28.299 --> 00:33:33.441
that she's not, she'll tell us that's not my field sometimes, but she can give us guidance.
00:33:33.441 --> 00:33:34.141
Yeah.
00:33:34.141 --> 00:33:35.060
Yeah.
00:33:35.342 --> 00:33:36.843
It's a pediatric dentist.
00:33:36.843 --> 00:33:39.584
the other other age spectrum, right?
00:33:40.964 --> 00:34:12.568
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.
00:34:12.972 --> 00:34:14.264
And it's easy.
00:34:14.447 --> 00:34:19.038
look, as I tell people, a lot of people want to anything.
00:34:19.481 --> 00:34:21.766
They don't want people to know I'm...
00:34:23.480 --> 00:34:27.362
The reactions are often, my God, that's so terrible.
00:34:27.362 --> 00:34:28.913
I'm so sorry.
00:34:30.514 --> 00:34:36.338
know, if anybody's listening, the right answer is, I'm sorry to have that.
00:34:37.679 --> 00:34:44.083
Anything I can do, or is there something that, you know, how's it going?
00:34:44.083 --> 00:34:48.815
Rather than, that's so terrible, you're gonna die, you poor thing.
00:34:48.815 --> 00:34:49.317
Right.
00:34:49.317 --> 00:34:50.798
You don't want people's pity.
00:34:50.798 --> 00:35:00.550
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.
00:35:02.519 --> 00:35:07.222
There's a little bit of a greater urgency in my life.
00:35:12.418 --> 00:35:13.090
That's a one.
00:35:13.090 --> 00:35:16.351
You know, I'm accepting.
00:35:19.192 --> 00:35:22.612
There's a phrase in Judaism, I don't know if it's Hebrew, it's Yiddish.
00:35:22.612 --> 00:35:27.043
It's part of Passover, Passover's coming up.
00:35:27.043 --> 00:35:31.775
The word's dienu, I don't know if you've heard it.
00:35:31.775 --> 00:35:36.387
Dienu, there's even a song, and it means it would be enough.
00:35:37.327 --> 00:35:41.148
If this were my last day, dienu, it would have been enough.
00:35:41.608 --> 00:35:42.918
I live in gratitude.
00:35:42.918 --> 00:35:44.849
I'm lucky.
00:35:46.210 --> 00:35:49.431
You know, we come from both from very modest families.
00:35:49.431 --> 00:35:53.273
didn't, you know, we worked our way up.
00:35:53.273 --> 00:35:54.952
We've done it well.
00:35:56.454 --> 00:35:59.835
Maybe because on our first anniversary marriage.
00:36:02.005 --> 00:36:06.309
Her mother died two weeks before our anniversary.
00:36:06.471 --> 00:36:09.184
My father died two weeks after.
00:36:10.460 --> 00:36:11.521
my goodness.
00:36:11.521 --> 00:36:18.237
We've had, we both, I've lost a sister, she lost, you know, we are so grateful for each other.
00:36:18.237 --> 00:36:23.222
And I want to give a shout out to one other person in my life.
00:36:23.222 --> 00:36:24.800
It's secret girlfriend.
00:36:24.800 --> 00:36:25.992
No, it's not.
00:36:25.992 --> 00:36:27.472
It's my, I call her my girlfriend.
00:36:27.472 --> 00:36:28.344
She's not living now.
00:36:28.344 --> 00:36:29.795
She passed away.
00:36:29.795 --> 00:36:31.536
Her name is Lynn Fielder.
00:36:31.655 --> 00:36:35.458
And I was on the board of directors at the World Institute on Disability.
00:36:35.458 --> 00:36:36.670
So I worked in that field.
00:36:36.670 --> 00:36:38.561
Lynn was on the board with me.
00:36:38.561 --> 00:36:40.141
We met back then.
00:36:40.181 --> 00:36:42.902
Lynn at was diagnosed with Parkinson's.
00:36:43.443 --> 00:36:45.943
And we became really close friends.
00:36:45.943 --> 00:36:50.385
she had me, in fact, the day I met her, for some reason she insisted we have lives.
00:36:50.885 --> 00:36:55.726
And she said, I'm not poor Lynn with Parkinson's, poor me.
00:36:56.001 --> 00:37:01.289
I am Lynn Fielder with Parkinson's and I'll be the best of that the world has ever seen.
00:37:01.768 --> 00:37:03.568
Know what I learned from Lynn?
00:37:03.710 --> 00:37:05.590
I am Sam Simon.
00:37:06.177 --> 00:37:11.197
with Alzheimer's disease and I will be the best of that the world has ever seen.
00:37:11.737 --> 00:37:19.619
And I, it was a new concept of embracing your life and you with what you are and has come.
00:37:19.619 --> 00:37:27.681
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.
00:37:28.320 --> 00:37:33.822
And we'll be, and we don't, I don't separate the Alzheimer's from myself.
00:37:34.402 --> 00:37:36.121
I don't, I can't.
00:37:36.396 --> 00:37:39.168
But I embrace, so I embrace it.
00:37:40.369 --> 00:37:42.300
And so that is the life I'm living.
00:37:42.300 --> 00:38:06.289
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.
00:38:07.384 --> 00:38:08.826
founders and most.
00:38:11.349 --> 00:38:12.891
impactful people.
00:38:12.931 --> 00:38:14.871
And I don't understand.
00:38:14.871 --> 00:38:16.125
I didn't understand.
00:38:16.125 --> 00:38:18.277
I often wondered why were they doing that?
00:38:18.277 --> 00:38:20.079
Maybe I was getting ready.
00:38:20.079 --> 00:38:22.309
That sounds woo woo like.
00:38:22.309 --> 00:38:36.568
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.
00:38:36.980 --> 00:38:43.193
And whatever we, I think, anyway, I don't want to judge anybody.
00:38:43.193 --> 00:38:50.896
I hope people can, if anything, this might help that they can reimagine their journey, embrace it.
00:38:51.297 --> 00:38:57.335
And yes, family, is in some ways all about that.
00:38:57.335 --> 00:39:01.963
I am aware that not every family is as lucky as we are.
00:39:01.963 --> 00:39:04.445
We are not dysfunctional.
00:39:04.965 --> 00:39:06.514
How's that friend negative?
00:39:06.514 --> 00:39:07.356
you?
00:39:08.101 --> 00:39:08.929
That's great.
00:39:08.929 --> 00:39:14.271
big fights and there's no big separate, that side of the family, we're lucky.
00:39:14.271 --> 00:39:16.585
And we've seen the opposite.
00:39:16.585 --> 00:39:17.505
Right.
00:39:17.847 --> 00:39:39.625
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?
00:39:39.846 --> 00:39:41.726
What would you like to tell them?
00:39:45.025 --> 00:39:48.449
Love them, hard stop.
00:39:48.911 --> 00:39:58.400
You know, I've come to believe that our ability sues the mind.
00:39:58.601 --> 00:40:01.385
And I don't think this is just for us.
00:40:01.606 --> 00:40:05.668
It would be the same with children, the ultimate act of love.
00:40:07.927 --> 00:40:16.905
I mean, in a really deep meaning of the word, is to be there for someone in your life, a parent.
00:40:19.849 --> 00:40:25.585
spouse but a parent as they are about to take their last breath and let them know their love.
00:40:25.989 --> 00:40:28.012
You're holding a gift.
00:40:30.626 --> 00:40:49.052
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.
00:40:49.072 --> 00:40:54.335
You know, if they've turned into an agitated and angry person, you still love them.
00:40:55.556 --> 00:40:58.376
And I think that would be my advice.
00:40:58.476 --> 00:41:06.293
And the gift back to you from that act is you've been able to show that and give that gift.
00:41:06.454 --> 00:41:09.016
So hopefully they'll allow you, we'll take it.
00:41:13.333 --> 00:41:18.679
And it is an act, it's act of love, the expression of love, being there when you need to be.
00:41:18.679 --> 00:41:20.420
It doesn't mean you have to go broke.
00:41:20.420 --> 00:41:22.431
It doesn't mean you should put yourself in danger.
00:41:22.431 --> 00:41:25.143
No, these are real questions.
00:41:25.184 --> 00:41:42.077
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.
00:41:42.465 --> 00:41:44.007
to keep me in their home.
00:41:44.027 --> 00:41:49.510
They do have an obligation to see that I'm taken care of, but they don't put yourself in danger.
00:41:49.510 --> 00:41:52.112
But I don't think that's what we're really talking about.
00:41:52.112 --> 00:41:55.454
I think it is that act of love.
00:41:56.550 --> 00:42:00.166
I think this is the first time that I've had a guest make me cry.
00:42:01.369 --> 00:42:07.159
But the reason why I wanted to explain, you know, my own emotions is that...
00:42:11.536 --> 00:42:16.838
my mom passed last year from cancer, from ovarian cancer.
00:42:16.838 --> 00:42:41.545
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.
00:42:41.706 --> 00:42:58.878
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.
00:42:59.018 --> 00:42:59.958
But...
00:43:02.969 --> 00:43:07.148
I think, you know, at the end it's just love that matters.
00:43:08.552 --> 00:43:10.233
And absolutely.
00:43:10.233 --> 00:43:17.326
And for that generation, again, I do want to say that this disease makes it hard sometimes.
00:43:17.947 --> 00:43:24.289
Because their parent may have become someone else, at least externally.
00:43:24.650 --> 00:43:31.494
They were never, but they're always who they were in your memory and for what they did.
00:43:31.494 --> 00:43:35.416
And they represent that, if nothing else.
00:43:35.577 --> 00:43:38.547
I hope it doesn't ever get to exactly that point.
00:43:40.010 --> 00:43:44.271
but you can still feel and see that in them.
00:43:44.271 --> 00:43:48.813
so, I mean, it's like I said, it's hard stop.
00:43:48.873 --> 00:43:54.054
There is, I've learned that it's a lesson hard learned and over time.
00:43:54.813 --> 00:43:59.246
So maybe it's a gift of people and particularly young people can hear that.
00:43:59.246 --> 00:44:01.606
And by the way, they're not so young.
00:44:01.606 --> 00:44:08.108
You know, that's how a general, my kids are in their fifties, right?
00:44:08.340 --> 00:44:09.159
right.
00:44:09.559 --> 00:44:11.780
Or 60s or 60s.
00:44:11.780 --> 00:44:12.659
Yeah.
00:44:13.994 --> 00:44:19.378
Susan and I were in some ways, at least we both lost our parents when we were young.
00:44:19.579 --> 00:44:20.398
Yeah.
00:44:21.134 --> 00:44:23.846
And even then, you know...
00:44:26.318 --> 00:44:29.077
And we're not going to go back over that.
00:44:29.697 --> 00:44:31.737
I still love this conversation.
00:44:31.737 --> 00:44:32.190
No.
00:44:32.190 --> 00:44:33.521
thank you so much, Sam.
00:44:33.521 --> 00:44:35.413
Thank you for joining me.
00:44:35.507 --> 00:44:46.625
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.
00:44:46.625 --> 00:44:49.347
And we will see you next time.
00:44:49.347 --> 00:44:50.065
Bye.
00:44:50.065 --> 00:44:51.088
and dementia.
00:00:01.895 --> 00:00:03.487
Welcome back to ask Dr.
00:00:03.487 --> 00:00:04.778
Mia podcast.
00:00:04.778 --> 00:00:09.422
Today I have a special guest with me, Sam Simon.
00:00:09.522 --> 00:00:15.887
Sam has been a lawyer for a long time and he's also a playwright.
00:00:15.907 --> 00:00:20.150
This is his, as he defines it, his fourth age.
00:00:20.472 --> 00:00:37.975
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.
00:00:37.996 --> 00:00:44.039
And since then he has produced his own play called Dementia Man.
00:00:44.039 --> 00:00:59.526
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.
00:00:59.526 --> 00:01:01.679
So welcome to the podcast, Sam.
00:01:01.779 --> 00:01:04.501
Thank you very, very much for having me.
00:01:04.501 --> 00:01:14.134
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.
00:01:14.701 --> 00:01:15.772
Absolutely.
00:01:15.772 --> 00:01:35.686
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.
00:01:35.686 --> 00:01:42.436
But can you maybe share with us kind of how what you had talked about with your children?
00:01:42.436 --> 00:01:48.510
around that time or since then in terms of your own memory problems.
00:01:48.941 --> 00:01:49.721
Well, sure.
00:01:49.721 --> 00:02:02.141
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.
00:02:02.621 --> 00:02:04.081
59 years.
00:02:04.081 --> 00:02:09.942
We're going to be 60 years in August 23rd, 2025.
00:02:10.581 --> 00:02:13.461
And I have two adult children.
00:02:14.562 --> 00:02:17.614
Our son, his name is Marcus.
00:02:17.614 --> 00:02:19.713
Same name as my father.
00:02:20.834 --> 00:02:22.674
And they live nearby.
00:02:22.674 --> 00:02:26.873
Our son lives at Five Minute Drive away.
00:02:27.713 --> 00:02:28.713
He's a lawyer.
00:02:28.713 --> 00:02:31.334
He's also a public official, by the way.
00:02:31.454 --> 00:02:34.854
He's a member of the Virginia legislature.
00:02:35.413 --> 00:02:39.253
And he's 26 in seniority out of 100.
00:02:39.253 --> 00:02:40.234
Yikes.
00:02:40.234 --> 00:02:41.933
Anyway, so he's been doing that for the last decade.
00:02:41.933 --> 00:02:44.174
He's also has a law practice.
00:02:44.213 --> 00:02:45.554
Our daughter.
00:02:46.110 --> 00:02:55.391
Rachel, so my son's name, Rachel, named after her grandmother, Rose, is a pediatric dentist.
00:02:56.013 --> 00:02:57.953
One's a lawyer, the other's gotta be a doc.
00:02:57.953 --> 00:02:59.873
No, it's easy.
00:02:59.873 --> 00:03:12.669
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.
00:03:12.717 --> 00:03:14.087
And we have four grandchildren.
00:03:14.087 --> 00:03:15.837
Each of our children have two children.
00:03:16.231 --> 00:03:32.931
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.
00:03:33.294 --> 00:03:37.336
Or just time pass fast.
00:03:37.796 --> 00:03:44.260
So yeah, I don't know if they noticed the earlier symptoms.
00:03:46.318 --> 00:03:50.937
I didn't necessarily notice them as being distinct.
00:03:54.258 --> 00:03:57.298
I owned my own company for a long time.
00:03:57.717 --> 00:04:00.377
I was successful in my business.
00:04:00.377 --> 00:04:02.377
I had sold the company.
00:04:02.737 --> 00:04:13.918
Our big first family deal with health challenges was when my wife, Susan, was fine now, went through advanced breast cancer.
00:04:13.990 --> 00:04:18.992
And there was a time when the doctors pulled me aside and said, get ready.
00:04:18.992 --> 00:04:21.213
A lot of things happened.
00:04:21.213 --> 00:04:22.954
My son was in the Army at the time.
00:04:22.954 --> 00:04:24.843
They were scheduled to go to Korea.
00:04:24.843 --> 00:04:31.297
They got a compassionate change of orders to live nearby and be here.
00:04:31.916 --> 00:04:35.678
My daughter was in dental school at the time.
00:04:35.730 --> 00:04:37.649
And I was her care partner.
00:04:37.649 --> 00:04:43.649
I've learned, and she's an unlikely survivor.
00:04:43.649 --> 00:04:45.430
Very thankful for that.
00:04:45.451 --> 00:04:48.913
Very unusual now that the roles are changed.
00:04:49.432 --> 00:04:52.834
And so we're a family where that happened.
00:04:53.175 --> 00:05:02.711
And it's so different because in part, you have, mine's not moving that fast.
00:05:02.711 --> 00:05:11.545
It's not like from uh-oh to And I don't have a cure option.
00:05:12.014 --> 00:05:14.533
Citizen dead and is unlikely survivor.
00:05:14.853 --> 00:05:20.494
So the first thing we had to do, this happened in two phases.
00:05:20.514 --> 00:05:23.494
I was first diagnosed with mild cognitive impairment.
00:05:23.934 --> 00:05:29.994
So I knew something was going on, riding, driving along wrong side of the road.
00:05:30.213 --> 00:05:32.434
I get lost.
00:05:34.033 --> 00:05:39.533
I would occasionally lose what I call cognitive awareness.
00:05:39.533 --> 00:05:40.934
It is I would...
00:05:43.117 --> 00:05:47.637
One without my wife, one with, I would just say, where are we?
00:05:47.697 --> 00:05:49.598
I just didn't know.
00:05:49.598 --> 00:05:51.798
All of a nothing was familiar.
00:05:51.877 --> 00:05:54.937
And it didn't last too, too long, but something was going on.
00:05:55.918 --> 00:06:02.958
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.
00:06:03.237 --> 00:06:07.278
But when we told them, they of course said, you know, how can we help?
00:06:07.278 --> 00:06:08.577
What do want to do?
00:06:08.577 --> 00:06:11.158
We didn't take drastic actions.
00:06:11.521 --> 00:06:23.432
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.
00:06:23.432 --> 00:06:28.937
It's a gold standard, right, that I'm tested against everybody who's just like me.
00:06:28.937 --> 00:06:30.517
And I did poorly.
00:06:30.899 --> 00:06:32.899
Five hour long test.
00:06:33.781 --> 00:06:37.084
And went through that.
00:06:37.944 --> 00:06:38.946
but then.
00:06:38.990 --> 00:06:41.649
We were lucky we finally got the ability.
00:06:41.670 --> 00:06:45.569
We went to Georgetown University here, hospital.
00:06:46.050 --> 00:06:57.689
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.
00:06:57.689 --> 00:07:02.569
I had to have a PET scan with contrast, at three to $5,000 a piece.
00:07:02.889 --> 00:07:09.038
But now I'm nominated for a drug trial and the sponsors of the trial paid for it.
00:07:09.038 --> 00:07:13.901
Sure enough, I'm what's called amyloid positive.
00:07:13.918 --> 00:07:25.247
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.
00:07:25.247 --> 00:07:35.815
And by the way, I had never been, had to have a terminal diagnosis delivered to me.
00:07:36.036 --> 00:07:38.377
I've empathized with you doctors.
00:07:39.446 --> 00:07:42.887
It's hard for doctors as well as a patient.
00:07:43.148 --> 00:07:44.769
Our neurologist wouldn't look up.
00:07:44.769 --> 00:07:47.290
He was looking down at the piece of paper.
00:07:47.451 --> 00:07:49.211
He sort of mumbled.
00:07:49.211 --> 00:07:52.814
said, think we're at a new diagnosis, and he sort of mumbles.
00:07:53.254 --> 00:07:55.836
At any rate, so we had to tell our kids.
00:07:56.115 --> 00:07:59.577
That was, and.
00:07:59.577 --> 00:08:02.946
I'm curious, what was their reaction when you told them?
00:08:02.946 --> 00:08:06.168
Well, it was loving.
00:08:06.408 --> 00:08:07.910
How can we help?
00:08:09.130 --> 00:08:09.812
We wanted it.
00:08:09.812 --> 00:08:11.312
They each wanted it.
00:08:11.312 --> 00:08:20.430
They're both very busy professionally and engaged, so they need to make their own arrangements, come have a meal together.
00:08:20.430 --> 00:08:30.925
We're Jewish and we're very involved in our synagogue, and so they actually wanted to come to services with us after it.
00:08:32.173 --> 00:08:34.254
It's a religious moment.
00:08:34.254 --> 00:08:38.994
you you've got an existential moment.
00:08:38.994 --> 00:08:42.073
so they're loving and they're caring.
00:08:43.894 --> 00:08:49.714
And I'm trying to remember who told us the first time to do the first thing you need to do.
00:08:49.714 --> 00:08:50.313
And who was it?
00:08:50.313 --> 00:08:51.913
Maybe it was our accountant.
00:08:52.193 --> 00:08:54.073
Maybe it was our son.
00:08:54.094 --> 00:08:55.453
So our son's now a lawyer.
00:08:55.453 --> 00:08:57.073
He's got a practice.
00:08:57.076 --> 00:09:00.067
In Virginia, you're not a full-time legislator.
00:09:00.107 --> 00:09:00.976
He's a practice.
00:09:00.976 --> 00:09:02.198
It's a real estate law.
00:09:02.198 --> 00:09:05.000
But I don't think it was him.
00:09:05.000 --> 00:09:10.833
Somebody told us, you need to see your estate lawyer, which was not obvious to us.
00:09:11.211 --> 00:09:13.485
Now you didn't hear that from your doctors.
00:09:13.485 --> 00:09:14.765
No.
00:09:16.625 --> 00:09:22.946
And the estate lawyer said, we're going to have to go through all your financial stuff.
00:09:23.066 --> 00:09:27.245
I think it all ought to be in the name of your wife or your children.
00:09:27.245 --> 00:09:29.426
You need to rearrange who's second.
00:09:29.505 --> 00:09:33.405
you know, second, we need to meet with your children.
00:09:34.005 --> 00:09:38.905
So I think that was the most dramatic moment for everybody.
00:09:39.446 --> 00:09:42.846
It makes it more real in some ways.
00:09:42.926 --> 00:09:47.086
So we get a lot of work done and things.
00:09:48.306 --> 00:09:52.865
And it's a practical kind of thing.
00:09:52.865 --> 00:09:55.946
We meet in his office.
00:09:56.785 --> 00:10:10.190
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.
00:10:10.190 --> 00:10:14.114
And he wrote this gigantic check for somebody in fraud.
00:10:14.114 --> 00:10:17.861
I still think I would never do that, but I don't know, right?
00:10:17.861 --> 00:10:21.350
hard for the person with dementia to know what they don't know, right?
00:10:21.350 --> 00:10:22.501
What they don't remember.
00:10:22.501 --> 00:10:23.513
how it'll affect me.
00:10:23.513 --> 00:10:25.643
So the kids have to hear this too.
00:10:25.643 --> 00:10:29.042
So we're lucky, they're very mature.
00:10:29.284 --> 00:10:31.205
We are fortunate.
00:10:31.865 --> 00:10:42.408
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.
00:10:42.528 --> 00:10:43.589
Anyway.
00:10:44.140 --> 00:11:07.591
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.
00:11:07.791 --> 00:11:08.392
Yeah.
00:11:08.392 --> 00:11:09.152
Yeah.
00:11:09.152 --> 00:11:19.880
conversation, and we are lucky because they have to decide among them which sort of level of authority each has.
00:11:20.049 --> 00:11:22.423
We're sort of worried about it.
00:11:25.446 --> 00:11:30.789
Should our son or our daughter or both have authority over checking accounts?
00:11:30.789 --> 00:11:33.192
Should they be the second?
00:11:33.192 --> 00:11:38.322
Who should be on the How are her father's attorneys?
00:11:38.501 --> 00:11:43.022
First and second, do we're gonna create competition between each other?
00:11:43.022 --> 00:11:49.361
We're lucky in part because she's in the medical field and doesn't know her schedule and she's further away.
00:11:49.601 --> 00:11:54.322
And so our son is A, one, a lawyer, and B, he's nearby.
00:11:54.322 --> 00:11:56.322
So that has worked out.
00:11:56.322 --> 00:12:00.601
We've we've seen other families where that becomes issues.
00:12:00.662 --> 00:12:04.594
So we know how lucky we are.
00:12:04.594 --> 00:12:10.498
And of course, my wife is first, but I don't own anything anymore.
00:12:10.498 --> 00:12:14.553
It's all my wife's trust.
00:12:14.553 --> 00:12:25.607
And again, then the disposition is there with our children, but it could have been to them too.
00:12:25.668 --> 00:12:27.549
in my son is second.
00:12:27.549 --> 00:12:33.613
Going through that in some ways is one of the most important things when you get a Cognivir.
00:12:34.861 --> 00:12:40.046
dementia because it's mild, mildly cognitively paired with dementia.
00:12:40.706 --> 00:12:42.488
I'm early stage.
00:12:43.288 --> 00:12:46.892
I've seen enough and believe enough that things can change in a moment.
00:12:47.273 --> 00:12:51.741
And I can do as smart as I think I am.
00:12:51.741 --> 00:13:03.995
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.
00:13:03.995 --> 00:13:04.812
Right.
00:13:05.142 --> 00:13:08.542
grandchildren are a little more cautious with me.
00:13:08.721 --> 00:13:18.402
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.
00:13:18.841 --> 00:13:22.442
He didn't do that when he was away or before the diagnosis.
00:13:23.062 --> 00:13:28.782
And all the grandchildren are one that spend time.
00:13:29.101 --> 00:13:33.621
So now we've got a generation below the sandwich generation.
00:13:33.922 --> 00:13:38.245
But our children, was it because they went to it with my wife?
00:13:38.245 --> 00:13:39.485
I don't know.
00:13:39.806 --> 00:13:46.321
They seem to be, they're very busy people, and they live near us.
00:13:46.321 --> 00:13:54.476
don't know what, I think there's such value in being nearby and being, we don't hide anything from them.
00:13:54.476 --> 00:14:06.773
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.
00:14:06.773 --> 00:14:13.904
are so, so far, I don't take anything for granted, so far so lucky with that.
00:14:15.645 --> 00:14:31.029
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.
00:14:31.029 --> 00:14:32.110
That's it.
00:14:32.110 --> 00:14:38.570
that are there, that are affected, in some ways affected more.
00:14:38.570 --> 00:14:43.929
There's also a situation.
00:14:47.169 --> 00:14:59.450
One of the advocacy pieces of my play is that I reject the idea, one of its main features is accompanied suicide.
00:14:59.889 --> 00:15:09.956
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.
00:15:10.096 --> 00:15:22.135
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.
00:15:22.135 --> 00:15:26.188
They've done really well financially and they're secure.
00:15:26.188 --> 00:15:28.049
But you would like to live.
00:15:28.429 --> 00:15:30.870
leave something to them as well.
00:15:31.169 --> 00:15:34.789
The cost of the disease is huge.
00:15:35.809 --> 00:15:45.309
And it can rob a family or us from anything for our children.
00:15:45.309 --> 00:15:51.730
And then may, you know, we should be able, a state attorney said, we have enough resources.
00:15:51.730 --> 00:15:56.951
We should be able to be independent since I have to live with them or.
00:15:56.951 --> 00:15:59.066
count on them for their resources.
00:15:59.066 --> 00:16:10.202
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.
00:16:10.644 --> 00:16:11.006
And...
00:16:11.006 --> 00:16:19.023
a lot from older adults that they're more afraid of being a burden to their family than the disease itself in some sense.
00:16:19.384 --> 00:16:19.880
Yeah.
00:16:19.880 --> 00:16:22.573
I sort of interpret that financial.
00:16:22.573 --> 00:16:24.014
I could be wrong.
00:16:25.448 --> 00:16:28.602
It's both financial and kind of physical, emotional.
00:16:28.602 --> 00:16:29.727
Just the...
00:16:29.727 --> 00:16:35.570
live in their house and if they had to put up with you and rob them of opportunities to do things.
00:16:35.570 --> 00:16:38.441
And we're lucky so far.
00:16:41.042 --> 00:16:46.842
We're looking for independent living for ourselves and we can afford it at this time.
00:16:47.923 --> 00:16:55.725
We don't know if we're going to have to, but these are, we're trying to, but these are so important.
00:16:55.895 --> 00:16:59.374
set of issues, isn't just Susan, it isn't just me.
00:16:59.426 --> 00:17:00.216
It is...
00:17:03.346 --> 00:17:04.405
for your whole family.
00:17:04.405 --> 00:17:14.432
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.
00:17:14.834 --> 00:17:27.061
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.
00:17:28.006 --> 00:17:33.385
I, I, I, I'm going to just tell you that I made my son ask him.
00:17:33.400 --> 00:17:39.634
who uses influence to get me in touch with that Microsoft Disability Office.
00:17:39.714 --> 00:17:42.916
And I got some special treatment, but okay.
00:17:43.407 --> 00:17:46.648
my goodness, Sam, you're not making it.
00:17:46.648 --> 00:17:50.309
You're making people very jealous of your situation right now.
00:17:50.970 --> 00:18:08.375
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.
00:18:08.375 --> 00:18:12.496
Tell us how did that play out for you and your family?
00:18:12.596 --> 00:18:14.372
It is playing out.
00:18:14.471 --> 00:18:15.359
Mm-hmm.
00:18:17.867 --> 00:18:32.368
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.
00:18:32.809 --> 00:18:42.998
I had, because we switched, you know, our first neurologist experience was so difficult, we went instead to somebody new.
00:18:42.998 --> 00:18:47.816
He didn't think I was that bad, but I didn't want to risk it.
00:18:47.816 --> 00:18:48.180
Right.
00:18:48.180 --> 00:18:51.971
One, didn't want to inadvertently get in an accident.
00:18:51.971 --> 00:19:07.079
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.
00:19:07.079 --> 00:19:10.301
So I did get, I chose to.
00:19:11.278 --> 00:19:14.817
Be examined and I got my doctor did a prescription.
00:19:14.817 --> 00:19:16.298
So this is a prescription thing.
00:19:16.298 --> 00:19:23.218
Interestingly, they do a prescription for examination, the vocational rehabilitation and I hadn't thought about it.
00:19:23.218 --> 00:19:24.678
They do this a lot.
00:19:24.678 --> 00:19:29.377
There are people who lose an arm or can't walk well and.
00:19:29.817 --> 00:19:40.481
And so they first of they test my cognition independent of the neurologist, which surprised me and then.
00:19:40.481 --> 00:19:53.242
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.
00:19:53.242 --> 00:19:55.733
She said, you had brakes?
00:19:56.134 --> 00:19:58.155
So she made me take it again.
00:19:59.758 --> 00:20:09.191
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.
00:20:09.191 --> 00:20:13.271
driving in the testing car with her own brakes.
00:20:13.494 --> 00:20:14.165
Okay.
00:20:14.165 --> 00:20:16.566
I didn't realize that she had her own pedals.
00:20:21.826 --> 00:20:27.746
Yeah, and it may have been the level of anxiety, I don't know, but I did it twice.
00:20:28.766 --> 00:20:31.625
So we have only one car now.
00:20:32.286 --> 00:20:35.746
It was not like, let's get rid of it.
00:20:35.746 --> 00:20:39.182
was one of the cars died and...
00:20:39.182 --> 00:20:43.862
We said, let's make it work with one that way we're most likely to be together.
00:20:45.122 --> 00:20:48.056
And so right now.
00:20:48.056 --> 00:20:52.240
sense of independence or how you feel about yourself?
00:20:52.781 --> 00:20:55.102
You know, I'm not that kind of guy.
00:20:55.102 --> 00:20:57.102
I I don't want to be critical of others.
00:20:57.102 --> 00:20:57.882
I see it.
00:20:57.882 --> 00:20:59.041
I've heard it.
00:20:59.041 --> 00:21:05.382
I know people who I've heard other men say they're angry and frustrated.
00:21:06.801 --> 00:21:10.142
You know, it happened in an era of Zoom.
00:21:10.481 --> 00:21:12.582
And so we can interconnect.
00:21:12.721 --> 00:21:16.362
There is this other issue, though, that's almost related.
00:21:16.721 --> 00:21:32.986
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.
00:21:33.292 --> 00:21:38.996
Social isolation, it's a challenge because you drive as much.
00:21:40.797 --> 00:21:48.800
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.
00:21:48.978 --> 00:21:50.394
There's a stigma.
00:21:50.394 --> 00:21:50.801
Yeah.
00:21:50.801 --> 00:21:54.801
to be, it's a stigma of sorts, it's just there, I can come in.
00:21:54.801 --> 00:21:58.261
So as a result, we feel isolated.
00:21:58.261 --> 00:22:01.582
That's why we are looking at senior living for ourselves.
00:22:03.541 --> 00:22:09.682
We're not there yet wanting to do it yet though the demand in our region is huge.
00:22:09.821 --> 00:22:15.382
One of the places we would consider that they had a 900 person waiting list.
00:22:15.636 --> 00:22:16.730
that would take forever.
00:22:16.730 --> 00:22:19.074
That would take forever.
00:22:19.074 --> 00:22:25.877
But well, they have ways to, they ask, have you put a little bit more money down that place?
00:22:25.877 --> 00:22:28.046
There are others we're looking at.
00:22:28.046 --> 00:22:33.011
We haven't put our name down on one, but we have a separate room.
00:22:33.011 --> 00:22:35.962
Our basement area has a guest room.
00:22:36.605 --> 00:22:39.506
There's also an adult daycare near us.
00:22:40.906 --> 00:22:44.269
So we're looking at those options.
00:22:44.269 --> 00:22:45.869
I know I'm talking to me.
00:22:46.604 --> 00:22:51.006
It's interesting, people see me and will have this conversation, you're fine.
00:22:51.006 --> 00:22:53.457
Well, they don't know what goes on behind.
00:22:53.758 --> 00:22:56.719
And even for our kids, they don't always say it.
00:22:56.719 --> 00:23:02.261
But then you get appointments, this whole issue of...
00:23:04.844 --> 00:23:07.335
You know, forget where your keys are.
00:23:08.273 --> 00:23:10.137
Everybody says, I do that too.
00:23:10.298 --> 00:23:18.784
What I learned and somebody told us is, yeah, your wife might forget where her keys are, but she can trace her steps.
00:23:18.865 --> 00:23:19.984
I can't.
00:23:20.625 --> 00:23:24.087
I don't know where I was earlier that day or where they might be.
00:23:24.147 --> 00:23:25.449
But those are small things.
00:23:25.449 --> 00:23:30.932
The driving, getting lost, not being sure where you are, not recognizing the streets.
00:23:32.397 --> 00:23:34.518
Traveling is very difficult.
00:23:34.518 --> 00:23:35.698
used to travel all the time.
00:23:35.698 --> 00:23:40.698
In fact, I used to work half time in New York City, so I'd commute every other week.
00:23:41.417 --> 00:23:46.178
When we fly and go to performances, we have to leave a day early.
00:23:47.298 --> 00:23:50.897
I'm a big advocate, by the way, in my show for some changes.
00:23:51.137 --> 00:23:56.298
One is, want, know, Susan is, I give her a name, she's my cognitive navigator.
00:23:56.397 --> 00:23:58.317
That is her role in life.
00:23:58.337 --> 00:24:00.518
And it's...
00:24:00.526 --> 00:24:06.865
But she, no, it's so, I mean, in play, she sits in the front row with a script.
00:24:06.865 --> 00:24:18.105
I have my script, getting through airports, dealing with what used to be familiar routine and now is, you know, every trip is new.
00:24:18.105 --> 00:24:20.026
People don't understand that.
00:24:20.405 --> 00:24:24.865
Yeah, I've seen the line before, but where is it and how am I supposed to do it?
00:24:25.445 --> 00:24:26.438
And...
00:24:27.000 --> 00:24:31.173
So it's helpful and our kids are great.
00:24:31.173 --> 00:24:47.962
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.
00:24:47.962 --> 00:24:53.625
So we're lucky in that way, but it is our children, right?
00:24:53.738 --> 00:25:03.444
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.
00:25:03.786 --> 00:25:06.768
Susan could do some, but she'll need the help.
00:25:06.768 --> 00:25:15.015
And we're lucky because we have two really great children who have the ability and training and resources to give help.
00:25:15.015 --> 00:25:28.211
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.
00:25:28.211 --> 00:25:51.919
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.
00:25:51.919 --> 00:25:54.803
I'm just curious how you thought about this.
00:25:55.905 --> 00:25:59.067
Well, we've come to the conclusion and she's been helpful.
00:25:59.067 --> 00:26:04.352
mean, that it's good for what I'm doing is good for me.
00:26:04.852 --> 00:26:13.337
And there we believe that my decline has been slower because it gives me meaning and purpose.
00:26:14.278 --> 00:26:21.723
And I think the you know, I've had audience members tell me I can still remember one.
00:26:21.723 --> 00:26:24.566
I almost say it was like one of my first.
00:26:25.453 --> 00:26:30.105
plays where somebody, you know, we have a question and answer discussion.
00:26:30.105 --> 00:26:37.077
The woman said her husband came home from getting the diagnosis, went into this bedroom and never came out.
00:26:37.077 --> 00:26:40.038
Now that was a figurative speech.
00:26:40.038 --> 00:26:41.458
He became deeply depressed.
00:26:41.458 --> 00:26:42.558
He didn't go back to work.
00:26:42.558 --> 00:26:43.819
He quit things.
00:26:43.819 --> 00:26:49.141
And that isn't, I mean, you can understand it.
00:26:50.082 --> 00:26:50.862
And...
00:26:52.748 --> 00:26:56.039
the need to be involved in things that give us meaning.
00:26:57.582 --> 00:27:04.126
Susan, during her diagnosis, she's, first of all, I'm lucky for another reason.
00:27:04.347 --> 00:27:08.570
She spent 14 years working in a senior living center.
00:27:08.570 --> 00:27:16.377
She was director of marketing and admissions at a senior living with a memory center.
00:27:16.377 --> 00:27:21.614
So she spent times marketing to people who had a spouse or somebody with.
00:27:21.614 --> 00:27:24.894
memory problems, and she was familiar.
00:27:25.094 --> 00:27:27.314
in some ways we're very lucky.
00:27:27.314 --> 00:27:29.554
And I'm glad you're talking to people who are lucky.
00:27:29.554 --> 00:27:34.814
Not everybody goes in, like I don't want to say it that way, because they go into the ditch.
00:27:35.394 --> 00:27:43.413
There are a wide array of experiences as there are people.
00:27:43.513 --> 00:27:45.102
And so.
00:27:45.102 --> 00:27:54.781
She had a certificate in gerontology and worked 14 years in an assisted living that had a memory center.
00:27:54.801 --> 00:28:00.182
So it's been helpful to her in how to deal with me.
00:28:00.281 --> 00:28:07.541
She needs, like everybody else, I'm good with it to be able to get her time off.
00:28:07.781 --> 00:28:11.582
The most serious thing that we've experienced, if you want that.
00:28:11.821 --> 00:28:14.541
is one of my experiences is agitation.
00:28:14.541 --> 00:28:17.801
One of my symptoms is agitation.
00:28:18.201 --> 00:28:23.501
And I remember the moment where I'm not mad at her, I'm mad at myself, right?
00:28:23.501 --> 00:28:24.602
I can't figure it out.
00:28:24.602 --> 00:28:26.241
It's never gonna be, yeah.
00:28:26.321 --> 00:28:28.198
But that hit her.
00:28:30.190 --> 00:28:34.170
Now, I knew it was an accident, but she wasn't sure.
00:28:35.210 --> 00:28:41.109
And so we had to talk to, Susan wanted to talk to a social worker.
00:28:41.509 --> 00:28:43.990
And she pressed me, we had to do it.
00:28:43.990 --> 00:28:45.809
We did it over Zoom.
00:28:46.109 --> 00:28:50.750
And she could tell the social worker, she couldn't say it directly to me.
00:28:50.750 --> 00:28:54.210
And even though was on Zoom, we gave her a sense of some safety.
00:28:54.329 --> 00:28:58.069
She said she was afraid that I might hurt her one day.
00:28:59.970 --> 00:29:07.576
It was so important for me to hear that and to be aware of that.
00:29:07.576 --> 00:29:10.519
so develop a plan.
00:29:10.519 --> 00:29:17.144
If I became agitated or physical, what to do and who to call.
00:29:17.664 --> 00:29:26.172
And I'm more aware of that, even though the explosions can't stop them.
00:29:26.172 --> 00:29:28.913
I'm very aware of not trying to...
00:29:28.961 --> 00:29:36.903
physically flounder, you know, and if she sees it, she knows to step back a little bit.
00:29:36.903 --> 00:29:42.986
Not that I would go after her, but again, I don't think we're, I'm not from Mars.
00:29:42.986 --> 00:29:52.489
I hope every family that sees this and begins to sense that is a risk that they know how to handle it.
00:29:52.489 --> 00:29:57.170
I'm lucky both in the fact that I can do this play at all.
00:29:57.185 --> 00:30:04.357
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.
00:30:04.357 --> 00:30:07.169
And it's useful for me.
00:30:07.169 --> 00:30:09.750
And Susan is trained.
00:30:10.109 --> 00:30:21.773
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.
00:30:21.773 --> 00:30:22.814
We all.
00:30:23.074 --> 00:30:30.038
We all have those dual, and this is important, think, I said it before, think, but we these dual roles.
00:30:31.300 --> 00:30:40.548
She cares for more, she gives me care, she's my cognitive navigator, but there's the emotional side of seeing me change.
00:30:41.048 --> 00:30:47.954
Because I'm going to be someone else eventually, unless some other cause of death.
00:30:47.954 --> 00:30:56.190
But this disease is progressive, and at some point, There'll be a different person in this body.
00:30:56.289 --> 00:30:58.849
Not a different thing, by the way.
00:30:58.990 --> 00:31:01.230
That's why I hate the word dementia.
00:31:03.049 --> 00:31:11.569
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.
00:31:12.089 --> 00:31:14.250
I mean, it's bad.
00:31:14.250 --> 00:31:15.650
That's why I hate the word dementia.
00:31:15.650 --> 00:31:18.049
This disease progression.
00:31:20.440 --> 00:31:23.381
When you can't change, can't, I can't undo it.
00:31:23.381 --> 00:31:26.250
I can't go around being why me?
00:31:26.281 --> 00:31:27.571
poor Sam.
00:31:27.571 --> 00:31:28.872
Because I can't change it.
00:31:28.872 --> 00:31:30.613
It is what it is.
00:31:30.613 --> 00:31:33.344
I can live it as best as I can.
00:31:33.344 --> 00:31:36.574
And that's not easy.
00:31:36.634 --> 00:31:48.718
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...
00:31:49.471 --> 00:31:59.288
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.
00:31:59.388 --> 00:32:04.863
And I also think that my wife and I, Susan, are blessed to have each other.
00:32:04.863 --> 00:32:08.204
And we work really, really hard.
00:32:08.204 --> 00:32:16.559
And this is, I would hope, if there's a message for any families out there, you can't change it.
00:32:18.374 --> 00:32:19.615
You can only accept it.
00:32:19.615 --> 00:32:23.218
techniques, the yes ending.
00:32:23.218 --> 00:32:28.894
There's a well-known person in this field, Tepa Snow.
00:32:28.894 --> 00:32:30.859
don't know if...
00:32:30.859 --> 00:32:34.953
Kind of the improv method of, you know, yes and, yeah.
00:32:34.953 --> 00:32:37.066
it's, and I've been trained in that.
00:32:37.066 --> 00:32:40.858
My theatrical work started with theatrical improv.
00:32:41.380 --> 00:32:46.805
And know, Susan and I joked that she's the no woman and I need to change that in her.
00:32:46.805 --> 00:32:48.935
But it's an instinct.
00:32:48.935 --> 00:32:49.527
No, you can't.
00:32:49.527 --> 00:32:50.146
No, we can't.
00:32:50.146 --> 00:32:51.327
No, we can't.
00:32:51.469 --> 00:32:52.730
Yes, we can do that.
00:32:52.730 --> 00:32:57.292
And the and is finding a way around the impossibility.
00:32:57.317 --> 00:32:58.880
Right, right.
00:32:59.137 --> 00:33:02.598
But it's helped with our kids too, and they've seen it.
00:33:02.598 --> 00:33:04.858
So we're lucky that way.
00:33:05.720 --> 00:33:13.061
But it is a dramatic effect on their lives.
00:33:14.561 --> 00:33:16.742
They're wherever they're available.
00:33:18.323 --> 00:33:22.374
We go to our son for all sorts of legal or help on things like that.
00:33:22.374 --> 00:33:28.299
And our daughter will call and ask medical questions.
00:33:28.299 --> 00:33:33.441
that she's not, she'll tell us that's not my field sometimes, but she can give us guidance.
00:33:33.441 --> 00:33:34.141
Yeah.
00:33:34.141 --> 00:33:35.060
Yeah.
00:33:35.342 --> 00:33:36.843
It's a pediatric dentist.
00:33:36.843 --> 00:33:39.584
the other other age spectrum, right?
00:33:40.964 --> 00:34:12.568
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.
00:34:12.972 --> 00:34:14.264
And it's easy.
00:34:14.447 --> 00:34:19.038
look, as I tell people, a lot of people want to anything.
00:34:19.481 --> 00:34:21.766
They don't want people to know I'm...
00:34:23.480 --> 00:34:27.362
The reactions are often, my God, that's so terrible.
00:34:27.362 --> 00:34:28.913
I'm so sorry.
00:34:30.514 --> 00:34:36.338
know, if anybody's listening, the right answer is, I'm sorry to have that.
00:34:37.679 --> 00:34:44.083
Anything I can do, or is there something that, you know, how's it going?
00:34:44.083 --> 00:34:48.815
Rather than, that's so terrible, you're gonna die, you poor thing.
00:34:48.815 --> 00:34:49.317
Right.
00:34:49.317 --> 00:34:50.798
You don't want people's pity.
00:34:50.798 --> 00:35:00.550
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.
00:35:02.519 --> 00:35:07.222
There's a little bit of a greater urgency in my life.
00:35:12.418 --> 00:35:13.090
That's a one.
00:35:13.090 --> 00:35:16.351
You know, I'm accepting.
00:35:19.192 --> 00:35:22.612
There's a phrase in Judaism, I don't know if it's Hebrew, it's Yiddish.
00:35:22.612 --> 00:35:27.043
It's part of Passover, Passover's coming up.
00:35:27.043 --> 00:35:31.775
The word's dienu, I don't know if you've heard it.
00:35:31.775 --> 00:35:36.387
Dienu, there's even a song, and it means it would be enough.
00:35:37.327 --> 00:35:41.148
If this were my last day, dienu, it would have been enough.
00:35:41.608 --> 00:35:42.918
I live in gratitude.
00:35:42.918 --> 00:35:44.849
I'm lucky.
00:35:46.210 --> 00:35:49.431
You know, we come from both from very modest families.
00:35:49.431 --> 00:35:53.273
didn't, you know, we worked our way up.
00:35:53.273 --> 00:35:54.952
We've done it well.
00:35:56.454 --> 00:35:59.835
Maybe because on our first anniversary marriage.
00:36:02.005 --> 00:36:06.309
Her mother died two weeks before our anniversary.
00:36:06.471 --> 00:36:09.184
My father died two weeks after.
00:36:10.460 --> 00:36:11.521
my goodness.
00:36:11.521 --> 00:36:18.237
We've had, we both, I've lost a sister, she lost, you know, we are so grateful for each other.
00:36:18.237 --> 00:36:23.222
And I want to give a shout out to one other person in my life.
00:36:23.222 --> 00:36:24.800
It's secret girlfriend.
00:36:24.800 --> 00:36:25.992
No, it's not.
00:36:25.992 --> 00:36:27.472
It's my, I call her my girlfriend.
00:36:27.472 --> 00:36:28.344
She's not living now.
00:36:28.344 --> 00:36:29.795
She passed away.
00:36:29.795 --> 00:36:31.536
Her name is Lynn Fielder.
00:36:31.655 --> 00:36:35.458
And I was on the board of directors at the World Institute on Disability.
00:36:35.458 --> 00:36:36.670
So I worked in that field.
00:36:36.670 --> 00:36:38.561
Lynn was on the board with me.
00:36:38.561 --> 00:36:40.141
We met back then.
00:36:40.181 --> 00:36:42.902
Lynn at was diagnosed with Parkinson's.
00:36:43.443 --> 00:36:45.943
And we became really close friends.
00:36:45.943 --> 00:36:50.385
she had me, in fact, the day I met her, for some reason she insisted we have lives.
00:36:50.885 --> 00:36:55.726
And she said, I'm not poor Lynn with Parkinson's, poor me.
00:36:56.001 --> 00:37:01.289
I am Lynn Fielder with Parkinson's and I'll be the best of that the world has ever seen.
00:37:01.768 --> 00:37:03.568
Know what I learned from Lynn?
00:37:03.710 --> 00:37:05.590
I am Sam Simon.
00:37:06.177 --> 00:37:11.197
with Alzheimer's disease and I will be the best of that the world has ever seen.
00:37:11.737 --> 00:37:19.619
And I, it was a new concept of embracing your life and you with what you are and has come.
00:37:19.619 --> 00:37:27.681
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.
00:37:28.320 --> 00:37:33.822
And we'll be, and we don't, I don't separate the Alzheimer's from myself.
00:37:34.402 --> 00:37:36.121
I don't, I can't.
00:37:36.396 --> 00:37:39.168
But I embrace, so I embrace it.
00:37:40.369 --> 00:37:42.300
And so that is the life I'm living.
00:37:42.300 --> 00:38:06.289
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.
00:38:07.384 --> 00:38:08.826
founders and most.
00:38:11.349 --> 00:38:12.891
impactful people.
00:38:12.931 --> 00:38:14.871
And I don't understand.
00:38:14.871 --> 00:38:16.125
I didn't understand.
00:38:16.125 --> 00:38:18.277
I often wondered why were they doing that?
00:38:18.277 --> 00:38:20.079
Maybe I was getting ready.
00:38:20.079 --> 00:38:22.309
That sounds woo woo like.
00:38:22.309 --> 00:38:36.568
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.
00:38:36.980 --> 00:38:43.193
And whatever we, I think, anyway, I don't want to judge anybody.
00:38:43.193 --> 00:38:50.896
I hope people can, if anything, this might help that they can reimagine their journey, embrace it.
00:38:51.297 --> 00:38:57.335
And yes, family, is in some ways all about that.
00:38:57.335 --> 00:39:01.963
I am aware that not every family is as lucky as we are.
00:39:01.963 --> 00:39:04.445
We are not dysfunctional.
00:39:04.965 --> 00:39:06.514
How's that friend negative?
00:39:06.514 --> 00:39:07.356
you?
00:39:08.101 --> 00:39:08.929
That's great.
00:39:08.929 --> 00:39:14.271
big fights and there's no big separate, that side of the family, we're lucky.
00:39:14.271 --> 00:39:16.585
And we've seen the opposite.
00:39:16.585 --> 00:39:17.505
Right.
00:39:17.847 --> 00:39:39.625
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?
00:39:39.846 --> 00:39:41.726
What would you like to tell them?
00:39:45.025 --> 00:39:48.449
Love them, hard stop.
00:39:48.911 --> 00:39:58.400
You know, I've come to believe that our ability sues the mind.
00:39:58.601 --> 00:40:01.385
And I don't think this is just for us.
00:40:01.606 --> 00:40:05.668
It would be the same with children, the ultimate act of love.
00:40:07.927 --> 00:40:16.905
I mean, in a really deep meaning of the word, is to be there for someone in your life, a parent.
00:40:19.849 --> 00:40:25.585
spouse but a parent as they are about to take their last breath and let them know their love.
00:40:25.989 --> 00:40:28.012
You're holding a gift.
00:40:30.626 --> 00:40:49.052
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.
00:40:49.072 --> 00:40:54.335
You know, if they've turned into an agitated and angry person, you still love them.
00:40:55.556 --> 00:40:58.376
And I think that would be my advice.
00:40:58.476 --> 00:41:06.293
And the gift back to you from that act is you've been able to show that and give that gift.
00:41:06.454 --> 00:41:09.016
So hopefully they'll allow you, we'll take it.
00:41:13.333 --> 00:41:18.679
And it is an act, it's act of love, the expression of love, being there when you need to be.
00:41:18.679 --> 00:41:20.420
It doesn't mean you have to go broke.
00:41:20.420 --> 00:41:22.431
It doesn't mean you should put yourself in danger.
00:41:22.431 --> 00:41:25.143
No, these are real questions.
00:41:25.184 --> 00:41:42.077
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.
00:41:42.465 --> 00:41:44.007
to keep me in their home.
00:41:44.027 --> 00:41:49.510
They do have an obligation to see that I'm taken care of, but they don't put yourself in danger.
00:41:49.510 --> 00:41:52.112
But I don't think that's what we're really talking about.
00:41:52.112 --> 00:41:55.454
I think it is that act of love.
00:41:56.550 --> 00:42:00.166
I think this is the first time that I've had a guest make me cry.
00:42:01.369 --> 00:42:07.159
But the reason why I wanted to explain, you know, my own emotions is that...
00:42:11.536 --> 00:42:16.838
my mom passed last year from cancer, from ovarian cancer.
00:42:16.838 --> 00:42:41.545
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.
00:42:41.706 --> 00:42:58.878
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.
00:42:59.018 --> 00:42:59.958
But...
00:43:02.969 --> 00:43:07.148
I think, you know, at the end it's just love that matters.
00:43:08.552 --> 00:43:10.233
And absolutely.
00:43:10.233 --> 00:43:17.326
And for that generation, again, I do want to say that this disease makes it hard sometimes.
00:43:17.947 --> 00:43:24.289
Because their parent may have become someone else, at least externally.
00:43:24.650 --> 00:43:31.494
They were never, but they're always who they were in your memory and for what they did.
00:43:31.494 --> 00:43:35.416
And they represent that, if nothing else.
00:43:35.577 --> 00:43:38.547
I hope it doesn't ever get to exactly that point.
00:43:40.010 --> 00:43:44.271
but you can still feel and see that in them.
00:43:44.271 --> 00:43:48.813
so, I mean, it's like I said, it's hard stop.
00:43:48.873 --> 00:43:54.054
There is, I've learned that it's a lesson hard learned and over time.
00:43:54.813 --> 00:43:59.246
So maybe it's a gift of people and particularly young people can hear that.
00:43:59.246 --> 00:44:01.606
And by the way, they're not so young.
00:44:01.606 --> 00:44:08.108
You know, that's how a general, my kids are in their fifties, right?
00:44:08.340 --> 00:44:09.159
right.
00:44:09.559 --> 00:44:11.780
Or 60s or 60s.
00:44:11.780 --> 00:44:12.659
Yeah.
00:44:13.994 --> 00:44:19.378
Susan and I were in some ways, at least we both lost our parents when we were young.
00:44:19.579 --> 00:44:20.398
Yeah.
00:44:21.134 --> 00:44:23.846
And even then, you know...
00:44:26.318 --> 00:44:29.077
And we're not going to go back over that.
00:44:29.697 --> 00:44:31.737
I still love this conversation.
00:44:31.737 --> 00:44:32.190
No.
00:44:32.190 --> 00:44:33.521
thank you so much, Sam.
00:44:33.521 --> 00:44:35.413
Thank you for joining me.
00:44:35.507 --> 00:44:46.625
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.
00:44:46.625 --> 00:44:49.347
And we will see you next time.
00:44:49.347 --> 00:44:50.065
Bye.
00:44:50.065 --> 00:44:51.088
and dementia.
