Living With Alzheimer’s-Interview with Samuel Simon

Welcome To Patty’s Place

SPEAKER_02

0:17

Welcome to Patty's Place, a place where we will talk about grief, dementia, and caregiving. I'm your host, Lisa. I named this podcast after my mom, Pimp, who died from dementia about two years ago. So grab your cup of tea, your cup of coffee, or if you're having a really bad day, a glass of wine, and come join us so you know that you're not alone. Today I'm very excited about our guest. His name is Sam Simon and his wife, Susan. He wrote the book Dementia Man, an existential journey, choosing life and finding meaning with El Sunday. Also has a woman act polemy as well. So, Sam, welcome to Penny's Place.

SPEAKER_05

0:55

Thank you very much. And it's great to be at Penny's Place.

SPEAKER_02

1:00

Yes, um, I'm I was very excited when I read your article um about your womanic polemity and and your book as well. So minimum of people were melomined, then Alzheimer's is the leading cause of death, and it's the only woman without a cure. Right. And you remedy in there then for those of out of your book, you say for those of some form of cognitive disease that affects the double or triple number, and then it affects two whole generations of society with it before that. And you said your goal is to share your story to invite people to join a revolution.

SPEAKER_05

1:40

Yes. Well, a revolution and to reimagine, if you will. Well, I I have another bit of news that I've just come to realize.

SPEAKER_03

1:52

Okay.

SPEAKER_05

1:54

2000 and 2026 is the first year that a baby boomer turns 80.

SPEAKER_03

2:05

Oh, okay.

The Coming Alzheimer’s Wave

SPEAKER_05

2:07

I did not know that. And um I until it didn't occur to me until recently. And um, of course, the baby boomer generation is gigantic.

SPEAKER_03

2:19

Yes.

SPEAKER_05

2:21

And my research is saying that in about five years we'll have the largest 80 plus year old cohort in the history of the country. Um, and getting prepared too, I was trying to find out well, who was the first baby ever born? Who was the big first baby boomer um ever born in 1946 because they turned 80 in 2026?

SPEAKER_02

2:51

Yeah, my dad turns 80 in September. So he was born in 1946. Yeah.

SPEAKER_05

2:56

There you go.

SPEAKER_02

2:57

There we go.

SPEAKER_05

2:58

So I tried I found the name of uh of a it's public because she had promoted Carol. I'm looking at Carol Trackman from Richmond, Washington, who was one of the first babies born in uh 1946.

unknown

3:17

Okay.

SPEAKER_05

3:18

But but uh wow. Yeah we we we are among a growing cohort of folks. It's not only age, but um I was diagnosed with Alzheimer's in 2022, so I was about 79.

SPEAKER_03

3:35

Okay.

SPEAKER_05

3:36

I'm sorry. No.

unknown

3:42

So 80.

SPEAKER_02

3:44

So you're in your you're you got diagnosed in like your your late 70s then. Okay.

SPEAKER_01

3:49

Yeah.

SPEAKER_02

3:50

So you talk about you want to be a patient cognitive voice for that. You want your work to be referred to that. Like, can you talk about that a little bit?

SPEAKER_05

4:04

I want to be a a voice for meaning for meaningful life with this disease.

SPEAKER_03

4:11

Okay.

SPEAKER_05

4:12

I want to be a counter voice um to a narrative that's out there that says life with this disease is not worth living. And there's so many stereotypes. In fact, the word itself, dementia, evokes end stage.

SPEAKER_03

4:34

Okay.

SPEAKER_05

4:35

And so much of that is out there that does that, that pictures a person with quote dementia just staring into the sky in a senior, you know, at a very advanced stage. And when I was diagnosed, my neurologist said it could be five to ten years before things got a lot worse. And um, well, that would be if I figure it out if I was right, that could be by the time I'm somebody 89 or something.

SPEAKER_02

5:11

I like I like how you wrote in your book when they tell you that five to ten years, you're like, is it from the time you noticed a symptom or is it from the time you got a diagnosis? They don't really tell you that.

SPEAKER_05

5:23

They really don't, they really don't tell you because that is true. Uh because most but many of us don't know that we have the disease, even though we struggle with early symptoms. You know, for me, it was driving on the wrong side of the road every once in a while. But of course, when I got alarmed by it, people say, Oh, don't worry, we do that too. Except I hadn't done it before, and then it happened a couple of times, and then there were other symptoms we uh started developing. So it's really hard to know sometimes when you know to get help.

A Voice Against Hopeless Narratives

SPEAKER_02

6:06

I want to talk about you wrote you you talk about the nothingness place. I I have to tell you that when I read that, it made me want to cry because I thought about my mom, because I always would think about how scared she must have been with that and not knowing where she was or what was happening. Can you describe that? Because I just think it's very powerful.

SPEAKER_05

6:31

So I uh yes, and I want to mention that you know, there is the saying that if you know one person with dementia, you know one person with dementia, that it is different for everybody. And uh I often get what you from people uh who see my show who have had a relative with the disease, say that they now think they they may sense a little bit about what their loved one had been going through. I don't know that, but I will talk about it because who knows?

SPEAKER_03

7:06

Right.

SPEAKER_05

7:07

The the what was happening to me is I would be often sitting down or someplace wanting to remember something.

SPEAKER_04

7:18

And I would exit this world.

SPEAKER_05

7:24

I would all of a sudden be tumbling through infinite deep space, looking for that word or that idea or that thought, and hoping that I would get to the other side because that's where the answer was going to be. And it was so real and trying to wake up. I don't have any sense of how long that moment was. Um I sometimes think it was just a nanosecond, it was just an instant. Felt to me like forever, but it could have just been uh Susan never mentioned that she noticed me in a trance or anything. Um, so I don't know. Um I like to tell the story. I was being I was going to my doctor's examinations, and we were at a neurologist's office, and he happened to have had, it was in the hospital memory center, and he had a um intern, but uh uh doing the neurology intern in the office. And the neurology intern says, Well Sam, is that a hallucination or was it real? And of course I hadn't since it was real, I was real. Oh, of course I wasn't floating. But it was so real to me that when I was asked the question, then I answered, yes, it was real. No, the the experience was real, but not I really wasn't floating. The experience of having the hallucination was real. Uh but uh and it would be increasingly frequent. Medicine has put it off. I occasionally feel like I'm at the uh edge of the abyss, ready for it, but it it's it's much abated um thanks to medicine.

SPEAKER_02

9:26

You talked about that, about your process with um the doctors. My mom refused to get, I tried to get her to to be diagnosed. She she would not go. I I I didn't get her, she didn't get diagnosed until it was my dad and I had to take her to the emergency room because she didn't know who I was or my dad was. But can you talk about that a little bit? Because I understand, based on not just my mom, but my dad has had some um medical issues, how frustrating that was for you. Uh, that whole process of what you went through. Because it took quite a long time, even for your first because first you were diagnosed with the mild cognitive.

SPEAKER_05

10:07

Um well, but even before that, right? I would complain to my interns about my memory. In fact, I will say something that's exact times, but I'll even go back further. Well, first of all, people should know, it's important to know, which I didn't realize. I have a genetic risk. Okay. I have uh one instance of the APOE4 gene, which increases your risk of Alzheimer's of 20 to 30 percent.

SPEAKER_03

10:39

Okay.

The Nothingness Place Experience

SPEAKER_05

10:40

Uh and there's a some study out if you have two from each side of your family, used to be considered to have Alzheimer's, but I didn't realize that. But I was experiencing some memory issues in the early 2000s, maybe 2009 or 10. That's a long time ago.

SPEAKER_03

10:59

Yeah.

SPEAKER_05

11:00

And I was had an annual physical, and I still remember, look what I did. I remember buttoning up my shirt at the end of the physical, saying, Hey, Doctor, I'm just wondering, I'm having uh, I think I may have a memory issue. I'm forgetting things. He says, Oh Sam, I know you. Now, if you couldn't remember what you had for breakfast, then I'd be worried about you. Breakfast. And I couldn't remember back then, but what he did, because I was still working every day and was being very successful in things. He sent me to a psychologist who presumed that I was under too much stress from my running a 50-person business and a lot of stuff. And he gave me an antidepressant or an anti-anxiety medicine. I think I probably could have been diagnosed as amyloid positive back then. That was a that was 20 years ago, but you didn't know.

SPEAKER_03

12:09

Right.

SPEAKER_05

12:10

Um and the the symptoms became uh more acute. And uh when I complained to my then in uh 2018 2018 or or so to my internist.

SPEAKER_04

12:28

Uh he said, Oh Sam, I um oh wait, wait, let me get it right down.

SPEAKER_05

12:37

Uh oh, oh Sam, you're just an over-educated man overreacting to normal aging. Then I told him about this experience of floating and internothingness, and that's when he scheduled me for an appointment with my first neurologist. But it took, I mean, and and when I perform and when we had these discussions with audiences, this is not unusual. So many people like shake their head. Yeah, yeah, normal aging. That's what they're telling me, normal aging. Just get used to it. And because I didn't have anybody in my family that I knew of with a history of Alzheimer's or uh cognitive disorder, um, it was presumed to be just normal aging.

SPEAKER_02

13:27

I I love the example you have in your book about the difference between not finding your keys for an unimpaired person like your wife, and for you is that like for me or for or for Susan, we can retrace our stops to find the keys, but for you, you don't have a place to start at all.

SPEAKER_05

13:46

And that that's yeah, I want to say hello to Susan, my wife, and 59 years, seven months and 10 days. Very good. Um and now known as my cognitive now. But she did the research and heard that and brought that to the so I don't know if you want to just mention that. Yes, I was not finding being able to retrace our steps.

SPEAKER_00

14:09

But yeah, that was but that was when you perform somewhere and someone asked that question. How can you tell the difference in the audience? And there was a nurse there who gave that as the answer, and she said, This is how you can tell if it's something that is really serious or is a part of aging. And she said, if you can retrace or you can go back and remember these things, then it's part of how you're aging. Whereas when he went to look for the keys, he had no idea. And so what we had to do is develop a system, and there is uh a place in our kitchen that when he comes in, that he can place his keys and his wallet and have that sense to know that that's where he goes to pick them up.

SPEAKER_05

15:13

So it's helpful to have a single place, singular place to do that stuff.

SPEAKER_02

15:18

Uh Susan, did you notice the changes in him before he did, or did he bring did he come to you with his concerns?

SPEAKER_00

15:28

He came to me. Okay. And uh and then it is interesting. Uh he will tell you the story. I don't know if it's in the book about that. He had another play that he was doing, and it was during COVID. And he at that point he had asked me, would you sit here with with a script?

SPEAKER_05

15:52

And we're in our basement doing zoos.

Why Diagnosis Takes So Long

SPEAKER_00

15:54

Okay. And I and I really I didn't know exactly why, but then as I saw him perform, and then I got to a part in the middle that he just skipped over because he didn't have the script. I had the script. And then I had to say, go back to this.

SPEAKER_05

16:16

So I had been performing that play. It's about Susan, by the way, had advanced breast cancer, and the doctor said she wasn't going to survive, she did. Uh, but I I had been performing memorized for like eight, nine years, and all of a sudden I was having a hard time remembering the lot. And uh that was uh again an early symptom. Um and it you know, it's if you do something and then people can't memorize it was sort of radical to us. It was just you know, sort of a shock. We done it so often. Uh but it again, there were there were other little things that we didn't uh talk about quite so much. But uh, like yeah, somebody would wave at me at a store who and I would wave back, but I have no idea I didn't recognize them either. There's remembering the name, but not even knowing the face anymore. That was another scary thing that happened.

SPEAKER_02

17:20

Well, I know with my mom, her and I used to go shopping all the time, you know. And the last time we went shopping, uh, usually like she'd go in one section, I'd go in another section, and then you know, we'd meet. But all of a sudden I turned around and she was like right next to me. And I realized later on she probably got disorientated or got scared and didn't know where she was, and then she found me. And and so she stayed right close to me because she didn't know uh, you know, where where she was with that that would not surprise me.

SPEAKER_05

17:52

It uh it's hard to often put these things into words as well, particularly. You know, I know even now I suspect people say, oh, he doesn't have I get that so much. They just don't know what's going on back here.

SPEAKER_03

18:07

Exactly.

SPEAKER_05

18:08

It is so different, and so it can be scary. That's why you know I don't travel alone anymore. We don't leave, we don't go too many places alone anymore. Um, because it's for me, it's also reassuring. Um but it is easy to get confused.

SPEAKER_02

18:33

You talk about that you want to start a movement to change how the world sees people with dementia. Can you talk about that?

SPEAKER_05

18:44

Well, um in so many different ways, um we want to move from end stage um also, um, and to realize I can still be out there, we can still be in the airport together, I can still go, you know, get to the grocery store if I want to. So knowing that we're out we're present, we can still function the doctor's statement five to ten years, you know, it's different for every everybody, it depends on when you've been diagnosed and uh the like. And there are so many of us out there. I want you know, there is this movement, particularly in travel, to have uh the equivalent of ramps. So maybe the better way to make this conversation under the ADA Americans with Disabilities Act, we see all big businesses or larger businesses have ramps. Um they often uh somebody should have even smaller desks for people who are uh with um wheelchairs, wheelchairs, the elevators, most all have these um dots and stuff for those who can do whatever that's called. I forget.

SPEAKER_02

20:10

Oh, for uh the braille for if you're blind, braille, but okay.

SPEAKER_05

20:15

There is nothing for somebody with a cognitive disorder. Yeah, you're right. In the airports in Europe, I'm gonna show you this is a lanyard.

SPEAKER_01

20:27

Uh-huh.

SPEAKER_05

20:29

Uh and the front says hidden disability. Uh in Europe, airports almost all airports have a desk with the yellow uh sunflowers. The people need help, they can go to the desk. I am an advocate and uh also a troublemaker, but we can talk about that. But I want the ADA to apply. They see we can't imagine that people who with a cognitive disorder can be out on their own. I can be. If need be, I could walk to our grocery store, I could take a be put in a cab or get in a cab or case like, or I can still early enough to, you know, I can still drive myself there. Um, but I can get confused. Right. I can go slower. I'm slower than other people and getting going through the groceries. What if there in every grocery store was a line that were for that had the yellow uh sunflowers? So people with a cognitive disorder would know to do that. Other people know that that line might be straight. And you know, there are stories that people get angry because somebody who is slow and usually from a cognitive, usually cognitively challenged, and they get angry.

SPEAKER_03

21:58

Yes.

Early Signs And Home Systems

SPEAKER_05

21:59

Um And so structuring it as an integral part of doing business. And in every store, I have a desk with the yellow flowers on top of it, not big, and somebody trained.

SPEAKER_02

22:17

Definitely. Yet you talk about that cognitive navigators.

SPEAKER_05

22:24

Yeah, no, it's my that is Susan is my that's catching on, by the way. We have seen that being used now, uh, apart from us, that uh people refer to cognitive navigation.

SPEAKER_02

22:38

I I think it's a wonderful idea because people don't understand, like you said, it's a hidden disability or hidden illness, I should say, because people look and they're like, oh, you look fine.

SPEAKER_05

22:50

They don't understand it's the brain, you know, that that and that there are early stages.

SPEAKER_02

22:56

Yes.

SPEAKER_05

22:57

We see again the word I want to change. There is a movement to change, uh get rid of the word dementia. Yes. Uh we don't use the word uh retarded anymore in our common medical languages. Uh and we should I have a cognitive disorder, cognitive disability, but a cognitive disorder.

SPEAKER_03

23:21

Yes.

SPEAKER_05

23:22

And I'm early stage, so I can do things that everybody else can do up to a point. You know, uh, and we keep developing new stories, but let me just be try to be quick because I think this may be a good one. Um we get some both Susan and I get a medicine now that requires an injection two weeks. Uh some new medicines. And I get one for my uh glycerides, and it comes, it's delivered, it's in ice, it has to be put in the refrigerator. One day it comes, they drop it off, I bring it into the house, I'm opening it up. I take the box out, put it down as I put you with stuff. Susan's about to leave the house. But then I look down to pick it up and it disappeared. It wasn't there anymore. And and I look around, you know, I do, I look around the kitchen, it's gone. I she's already at the car, and I run out to her. Susan, get in here, help me. My medicine's disappeared.

SPEAKER_04

24:28

And you gave it to me, and I put it in the refrigerator. But I didn't remember in real time.

SPEAKER_03

24:36

Right.

SPEAKER_05

24:36

This is how it's different for you know, people just don't these little little big things can happen. Um, and it is learning how to, you know, but and the goal is not to, you know, put us in a memory unit right away.

SPEAKER_03

24:55

Right.

SPEAKER_05

24:55

Not to, in fact, the data, there is just something in the this morning's newspapers, a study in Europe, Europe that shows that people who are out and about and exercise and read will have better cognitive capacity, even if you have a genetic risk. Uh, we need to be able to get out and move and be present and do things. And the world, just as we have for wheelchairs, needs to be designed to enable that.

SPEAKER_02

25:32

I I would definitely agree with that. What how do you feel about the advice? Because I I it took me a while to learn, but with my mom, I would enter her world that helped where she wasn't so agitated. So, do you think that that is good, or do you feel like you know, some people want to like shock the person with the cognitive uh disease, you know, no, this is the reality, this is today's date, or whatever. How do you feel about that?

SPEAKER_05

26:00

Okay, yes, yes, you're you're at our special challenge point. Okay, it is it's called the yes and it's like an it's an improv. So I was blessed, really. It's just it's like things happen for a cause, but you don't know them. I happen in an unlikely way to end up doing theatrical improv.

SPEAKER_03

26:24

Okay.

Designing Help For Hidden Disability

SPEAKER_05

26:24

It's a hobby. I was professionally trained though by some of the best improvisers in the country. Um give credit to the late Gary Austin, but um in just learning how to live a life of yes and in, accept all information given and then add to it in this world of cognitive impairment in dealing with somebody with that. What you just described is the issue for so many people. You cannot correct us, right? Yes and you can't say, you're wrong, this is how it is. Don't you see? Well, if they saw they wouldn't see this other world, right? Uh, but it the temptation, and Susan is, you know, it's you know, Susan is by nature. Remember, we've been married a long time. It's by nature a no first. You know, it takes her a minute to, you know, just to style, you know, and she's a no, no, let's do this and that. So it's a form of yes ending, but for her it's a no first, you know, not how she reacts. But it's you know, if I it hadn't happened quite yet, but you know, again, it it happened with that thing I forgot that I'd given it to her. But if all of a sudden I wake up and uh saying it's time to go to church or the Jewish synagogue, and it's Wednesday at three and not Friday night, she's gonna she can say no, and that might be all right. Or she could say, Well, yeah, we got to get there on time. Today's Wednesday, you remember how do we and then maybe that'll help? Or a form of how do you yes, and a more dramatic example of that, because we hear it now. We've been in this space for a while, hear a lot of stories about people with advanced dementia in a home, a private house, realize thinking they're not home. So they say, you know, uh, they'll tell their significant other caregiver, just go home. I need to go home now. To say to them, no, you're not, you're home, won't help.

SPEAKER_02

28:51

No, it doesn't.

SPEAKER_05

28:53

Yeah, saying yes, okay, no, first you got to get dressed, okay, we're gonna go. Depends on the situation. We've seen examples of somebody who um walked out, side to the front, walks back in. Sometimes they have to walk around the block, sometimes they get in the car and draw around the block and come home. Yeah, it doesn't people haven't experienced to live with this. That may not may sound silly, but it were you yes, ending usually can resolve most things, not always. Uh there's a a woman you may know, T Passnow. Do you know of TPA Snow? Uh no. Two Snow is there's a lot of training in this field for people who work in this field, and her primary focus is teaching the yes anding of care. Um in one of her videos we saw is a perfect example. She she puts herself in a um conference room or a small uh conference room of a senior living, and a woman walks in and she says, This person has been a maid before. The woman walks in with a brush and whacks the bottom of chairs, you know, and she and it happened in real time. And you can say, Stop it, or what Tipa did said, Oh wow, you're terrific job cleaning. This is the last chair, and she finishes. Good job, you've cleaned all these chairs now. Let's go have lunch. It's the difference between no stop it and accepting the moment that this woman person thinks they're cleaning up because they uh you know, there's another uh help me uh kind of senior care living. It's the Montessori for senior living, where they're applying the Montessori techniques to memory care.

SPEAKER_03

31:00

Okay.

SPEAKER_05

31:01

Now, Montessori, as I understand it, in education for young people, is they see people, young people's natural talents and try to use them to help educate them. They're they're athletic or if they they're good at numbers for in Montessori for senior care, they they learn the person's history. And I performed at one of these senior living places once, and they said, if you come to our memory care, we'll make you, we'll put you in charge of the theatrical.

SPEAKER_02

31:31

Well, it it it it's funny because with my mom, if when because we had to put her in memory care, her it she was already by the time she quote unquote got diagnosed, she was in moderate to severe. Um if they came and they said, Hey, Pam, do you want to play bingo? She'd say no. But if they came in and they said, Pam, we really need your help. Can you help us set this up? She would be right there. Sure, I'll come help you. Because she that was her nature and that uh that worked for it.

unknown

32:03

Perfect.

SPEAKER_02

32:04

Yeah. Yeah. Instead of fighting with her, yeah. That's what she and then she loved it because she felt like she was helping for it.

Yes And Communication In Care

SPEAKER_00

32:12

Communication is the hardest thing with this disease. I think um, and you know, as much as you think you're listening, or you can do this, or you can do that, if it comes at the wrong time, you as the person that is the the care person is exhausted or something happens. This is when you hear these kinds of things happen the most, you know, that you just want to stop it and why can't he understand this, that, and the other? And I seem to call a lot of things it. Do you see it? And now I am learning, but he told me I don't know what the word it means. Can you describe it? So we're still at a stage where he can tell me, which is wonderful. Yes, but I I didn't know that. I just talked like I normally talk, and so I think that's something that we have we as care people have to think about. Is there another way to say it? And I don't know if you had that experience also.

SPEAKER_02

33:29

I didn't, you know, I realized my mom didn't know what certain words were or them, and I would try to get her to try to explain it to me or like try to figure it out. And then at certain points I just went with her. If, you know, if she said this was blue and I'm and it was, you know, remember, oh yeah, it's blue, you know, like because at a certain point after a while I was like, I'm gonna want to argue with her, why aggravate her, you know, because quite frankly, five minutes later she wasn't gonna remember what she did anyway. So, you know, it did teach me to be in that present moment with her. It took a while before I could understand them, but then it helped because I ended up being that person when she got really, really agitated or upset that she would like grab them by the hand and be like, please don't leave me, please help me, you know, and and then and then a woman um with it. But it does take a long time to figure out that communication. So then that you're you're giving you giving that person that dignity that they need and also understanding and not agitating them and begin to understand what it is. It's a very complicated disease. It really is.

SPEAKER_01

34:37

Yes.

SPEAKER_02

34:38

Yes. You um also talk about anticipatory grief or dealing with loss and bad news. What would you say to somebody who is, you know, possibly getting these these diagnoses? What would you say to them?

SPEAKER_05

34:52

Well, anticipatory grief came up in my because I in my book I talk about uh for a bit about our earlier my first our first round. And I it sounds odd, but we've been gifted, if you wanted to use that word. In retrospect, it is I mean, it's certainly helpful now. But having gone through Susan's breast cancer, and I was having to anticipate her passing. And um I use the word mainly in the in that regard, and how to understanding what that is, and I walked up to the abyss. I mean, you know, she was supposed to die and got close now. Um in this disease, I don't know because we're on different sides of it, whether there's but there is something formally known as anticipatory. It is getting ready to lose someone you love or lose anything that you love, uh, but to lose your partner. You know, and then it what's complicated in this disease is and I and I appreciate this, and this is not small. Um Susan Susan Susan was always Susan. When Susan was going through her illness as her caregiver, she was a woman I always loved, I met, and uh I wanted to be there and I wanted to help her the best I could. I'm becoming someone else. Yeah, she's losing me before I actually die in some ways. Yeah, that complicates the role of the care person. And there are I I haven't seen too many of them, but I'm sure there are stories of people who just can't do it. Uh I I remember now the story I have about this quick, but we were at a funeral where um someone's husband passed away after having dementia all the time.

SPEAKER_04

37:11

And they were friends and we had known both of them. And we were in the room and we o I overheard the wife tell a friend, you know, he wanted to live so badly.

Anticipatory Grief And Ethical Strain

SPEAKER_05

37:25

He he tried to scoot out of the house on his bottom to go outside. And then she said, I'm so glad he's dead. And it was such a heartbreaking thing to listen to, but I understood it. Um and I think for people to hear that that happens, that does happen. And and so I was a care partner for Susan with a terminal diagnosis, and she was always Susan. She was always a woman I married and loved. I may become someone entirely different. And yet, and that's true for many people, or my you know, you don't choose your parents, but even so, um the temptation to leave to exit and to be free of that, and certainly in marital circumstances where there is no legal obligation. Yeah, there are you know there are ethical issues here too. And um, I believe the requirement is to make sure your parent or your spouse is cared for. It may be necessary to not be in the room all the time or to live together.

SPEAKER_02

38:45

It is it it it is difficult uh when you do you you you lose them twice because like I said, my mom didn't know who I was. She just thought I was this really nice girl that came to visit her. So I mean it it it hurt, but after a while, you know, I I don't say I got used to it, but it didn't bother me as much, you know, for it. So I did lose her that way first, even though physically she was there, you know. And then you lose it again when she, you know, when they actually done it. So the the part is hard, but I do appreciate the fact that I did learn from her to be in that moment with her, because at least I got to experience that with her uh for it, because I I do think that this disease teaches you to be right in that moment because that's the only moment that you have with it.

SPEAKER_05

39:36

Yes. And it's not, and I just want to acknowledge I I know it's not easy. Um therefore, and you know, we're still at that phase, by the way, where we we work hard and not going into the ditch. I don't know if that's the right way to say it. Um we talk about it a lot. Um it is so easy to feel feel sorry, to get sad, to um give up in some ways. You know, some of the worst things we could do is just sit in front of a TV and watch and don't get out there or don't work anything. Or, you know, doing my play. The work around making it happen is not small.

SPEAKER_02

40:23

No, not at all. And you're on you're on the East Coast, right, for your play?

SPEAKER_05

40:28

Yeah, yes. But we've been to San Francisco and uh LA and Okay Um Colorado. Um but so um I'm sort of lost my the point I was going about. Lost my train of thought.

SPEAKER_03

40:53

Oh that's okay. That's okay.

SPEAKER_05

40:56

Oh, but then we talk about it. So we we have to be conscious and aware about how we're gonna ha do well and be very specific. How are we gonna be happy? How are we gonna what can we do to make you know we're we're blessed that we have two adult children and they they support us and we have grandchildren and they're all there. We're not isolated from them, and uh so so we we're blessed with all that, but it it is easy to to close in, and that's why we have to oh and you know uh you know um it's very important not to be isolated, and we're gonna be moving into a senior loving place uh just about a year from now because they're building it.

SPEAKER_03

41:51

Oh, okay.

SPEAKER_05

41:52

Um but in part, even us who be very involved in our community, and we have a son who is a politician and he's well known, he's in the Virginia State Legislature. Okay, but and we're feeling nice. And um because there is, I don't know if you saw it too, but there is a sense that people tend not to want to be around it.

unknown

42:20

Yeah.

SPEAKER_05

42:21

Around them. And they're you know, we I would perform someplace at a senior living uh looking at Susan because she I think she'll remember it, where a couple came up to us and said, you know, we've my husband has dementia now. We we just joined, but he's really, but nobody wants to sit with us anymore.

SPEAKER_02

42:42

I I yeah, I think because people don't understand it and they get scared of it and they don't realize that the person's still in there. You know, it might be communicated differently, but they're still there.

SPEAKER_05

42:53

So and and they have gifts to offer us.

SPEAKER_02

42:56

Yes.

SPEAKER_05

42:57

Their mere presence uh is helpful, but it is an interesting we're learning, we're learning as we live it.

Book, Play, Resources, Closing

SPEAKER_02

43:04

Yes, definitely. Well, thank you so much for joining us today. So you have your website is dementiaman.com, correct? So people could see where your play is, they can get your book off of Amazon. It's it's very good read. So if you have had anybody that has had this disease or is going through it, it's definitely gives you that perspective for it.

SPEAKER_05

43:26

Breaking news, breaking news.

SPEAKER_02

43:29

Yes.

SPEAKER_05

43:30

I'm beginning to, and we'll have it happen later this month. We're now I was reluctant to do it before, but we'll do a performance over Zoom of the play.

SPEAKER_03

43:40

Okay.

SPEAKER_05

43:54

There are people who argue life with this disease is not worth living in. There is an option to go to switzerland and stuff like that. And I don't want that. I don't want people who are not in a in a group who with somebody to help them with it. But well we will offer it over Zoom now. So you don't have to fly us out.

SPEAKER_02

44:16

Okay. Uh that's on the website dementiman.com. You also have a lot of wonderful resources in this book as well too. So so thank you so much for joining us. This has been so enlightening. Very informative.

SPEAKER_01

44:29

Thank you, Patty.

SPEAKER_02

44:31

Thank you. So I hope you've all enjoyed this. Hope you enjoyed your cup of coffee, your cup of tea, or your glass of wine and just know that you're not alone. Leave us a review, subscribe to our YouTube channel, and enjoy it please come again and enjoy another episode of Patty's Place.