Sept. 17, 2025

Dementia, Caregiving & Exit Strategies: A Conversation with Madeline Jaye

Show Notes
Transcript

This week on Dementia Discussions, I sit down with someone very close to my heart—my childhood best friend, Madeline Jaye. We reconnected after many years, and I was deeply moved to learn that she’s been navigating her own journey as a caregiver to her mother, Bonnie, who now lives with Alzheimer’s and other forms of dementia. Madeline doesn’t just share her caregiving story—she’s also transformed her experience into a one-woman play that’s as hilarious as it is heartbreaking.

In this episode, Madeline and I reflect on what it means to care for someone who didn’t always care for you, how humor can be a powerful coping mechanism, and the complexity of aging, memory loss, and family dynamics. You’ll hear about the signs she missed, the chaos she uncovered, and the incredibly creative outlet that helped her process it all. Whether you're a caregiver, a theater lover, or simply someone interested in the raw truths of dementia, this conversation will stay with you.

Episode Highlights:

[1:43] Reconnecting with Madeline and discovering her caregiving story
[3:15] When the signs started—how Bonnie's independence masked memory loss
[5:27] Understanding “cognitive reserve” and its role in delaying diagnosis
[7:50] The pivotal moment when Madeline confronted her mom
[10:36] Navigating testing, early resistance, and inconclusive results
[12:53] Bonnie’s home life and hygiene—early warning signs surface
[17:41] The uphill battle of introducing help and home care
[20:04] Strategies and resistance to caregiving support
[23:40] Learning to separate the disease from the person
[26:17] How Madeline’s play came to life—and the powerful message behind it
[34:56] Playing every character in a solo performance
[35:26] Humor in the heartbreak—yes, there’s bacon in the dish cabinet
[39:27] Managing Bonnie’s bills, hoarding, and household neglect
[44:36] The overwhelming task of stepping into her mom’s financial chaos
[47:05] What made it into the play—and what may come next
[48:17] Why writing became Madeline’s most powerful coping tool
[50:01] Where and when to catch Dementia and Other Exit Strategies live
[51:22] Reflecting on Bonnie—the dynamic woman we both knew

Links & Resources:

Madeline Jaye's Play Info: Dementia and Other Exit Strategies
September 26 & 27 at IRT Theater, 154 Christopher Street, NYC
Instagram: @madjmoves

Do you have a caregiving story to share? Barbara would love to hear from you! Please leave her a message at 310-362-8232 or send her an email through DementiaDiscussions.net. If you found value in today's episode, please don't forget to rate, follow, share, and leave a review. Your feedback helps us reach more listeners and continue producing this content.

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My acting teacher read the script, and he said, Well, if you could sum it up like, you know, like Tootsie, tootsies about a man who became a better man by becoming a woman, you know, got it, and I couldn't. I was like, Ah, I don't know. So I just started brainstorming. And Ron is always my back board, and we were throwing things back and forth, and I said, I don't know, sometimes you just have to take care of people who didn't take care of you. And Ron burst into tears. He was like, Oh my God, that's it. That's so true, because he also took care of his parents when they were dying and his dad had Alzheimer's.

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Hello and welcome to season four of dementia discussions. I would really like to take a moment to thank the guests who were on this past year and to thank you the listener. I really could not do this show without you. And over the past couple of years, some of you have called me, so I'm encouraging more of you pick up the phone and call me. I'm accessible, and I'm so eager to hear your story. I'm at 310-362-8232, or you can email me at dementia discussions.net so again, thank you. I'm grateful for you and so looking forward to another year of us being together. You Hello and welcome to dementia discussions, the podcast for and about caregivers. I am sneaking another recording in this month because I have just learned that my childhood best friend has her own story with a dementia caregiving experience, and has written a play about it, and the play is coming out in just a couple of weeks, so I'd like to chat about that, but first Madeline. So great to see you.

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After so long, I love that we're back in touch.

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Me too. It's thrilling, and it's all still there. It's really

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nice. It is.

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It's like we picked up where we left off. Yes, completely. Yeah, yes. So of course, I knew your mom as a kid. Yeah. Can we use her name? Yes? So yes, Bonnie, in my little girl mind, was glamorous and just beautiful and knew how to make a mean onion soup.

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Yeah,

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that's true, yeah, right, yeah.

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And I just loved coming over to your house. She was so warm and welcoming, and then we lost touch for a lot of years. So yeah, I had no idea who tell us about your mom and kind of, I guess, pick up when, when you started to notice a change in her.

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Well, yes, she always was glamorous and like the life of the party. And our house was always the house, and everybody was always welcome there. There was always another little side to her that was a little less nice to my myself, but yeah, and then around the time that we had kids, I was in my late 30s, when I had kids so well, I was 34, and 40, so Bonnie was very busy in her life, and she just seemed busy.

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And I think that she was, she wasn't in touch a lot. She she wasn't like a real baby person.

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So she didn't love, you know, my kids when they were babies, but she really enjoyed them once they could speak and talk, but she just started distancing herself from us. And when the kids were, I don't know they're five years apart, so I can't remember exactly when it was my father had lived in California and moved back when his third wife died, and I started to try to cultivate a relationship with Him, for my kids sake, and I was spending time with him, and I realized as I was spending time with him that I wasn't spending as much time with my mother. And she used to, like, call me and stuff, but she just wasn't calling that often. So she was probably this was probably like, wow, like 1314, years ago now.

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But she's very, very bright, and she has a huge vocabulary. And so I think when she was doing mental work around we couldn't tell. Because she wouldn't call something the, you know, something really basic, like she does now. She would just have another word for it, so she would have a moment almost imperceptible. And I think that happens with a lot of intelligent people. I think dementia is very hard to spot at the beginning for people who are in the habit of using their mind in a very intellectual way or creative way.

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What you're saying is so common. They call that cognitive reserve. It's so true. It's so true people who are super intelligent, and even when they get tested on some of these standard tests, some of these standard like memory loss tests, doesn't show up. Yeah, they score really well,

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right? Yeah, so.

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And also, she's a very proud and private person. So instead of like, saying, I think there's something going on or whatever, she just started with drawing.

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And then even with the kids, she started to, like, not show up for things or whatever. But I was so busy, and my mother was so independent that I just felt like, Okay, well, she just doesn't want to see me right now or whatever. And then one day, I just showed up at her house, and her friends had started calling me. Is Bonnie, okay, what's going on? She's not returning calls. And these were people.

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They were like, my other parents, they were people in our life for so many years, and they were calling me, and I was like, that's weird that they're calling me and she wouldn't return anybody's calls, so I just showed up at her house one day unannounced, and I said, are you okay? And your friends are calling me, and I don't know what to tell them, it's not for me to say. And she was like, That's right, it's not for you to say, you know, this is in my play. So she finally just said, I'm depressed. So I asked her, Well, are you seeing anybody for the depression? No, I'm not seeing anybody. And the thing is, she would recommend therapy for everybody in her life, anybody, anybody? But she would never go herself, never, ever.

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So I sort of looked like okay, but at that point my father, he had sort of given up. He just decided he had had an operation, and just basically decided he didn't want to get better. So and they were divorced years and years ago, years and years ago.

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Oh, but my mother still says mean things about him, even though now he's been dead for years. She never misses an opportunity to something,

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oh my gosh. Sorry.

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That has nothing to do with Alzheimer's, but that is a fact kind of a piece of work. So anyway, I just cornered her one day I started noticing, like, all these weird things, and so we were in the car, and I just kind of trapped her in the car and said, I've noticed that you might be having some memory issues. And she said something very, very funny, which actually isn't hers, but somebody at one of her dog park friends, because she lost all of her 50 Year friendships, so now she only had people you know, that she just met so she could sort of reinvent herself. And she said, Well, I told somebody at the dog park, and they said, well, Bonnie, if you're only having memory issues some of the time.

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Maybe it's just part timers. And I was like, Yeah, you know, that's a love friendly way of, you know, helping someone out.

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But she did admit that she noticed some memory things, but she wasn't super keen on going to be tested. So I found a place in New Jersey, the cognitive something. I should know the name, but I don't know it's okay, not really close to her house, actually, and actually made her an appointment. And I said, let's go. But as a former learning disability specialist, she had given people cognitive tests like her whole professional life. So she felt like the tester thought that she had one up on Bonnie, like, you know. So Bonnie was like, Well, I've given these tests, and she was very terrified of being diagnosed. And when we got the report back, and they Well, first of all, they told her to stop smoking, which she still smokes a pack a day, about not giving that up. Yeah, yeah. She just thought that woman was like an idiot for saying that, like she's funny. Said, I know it's bad for me, but what she didn't know is that it hastens flame brain plaques, and, you know, can mess with cognitive. Of issues. So she was not interested in any of that. So then that report recommended like further testing for dementia and Alzheimer's and other cognitive disorders. She wasn't really that interested not having it. No So, so she gave me parameters. She lived in New Jersey. You know, I live in New York City. New York City is full of experts, and people come to New York to be the best or whatever, right? So not that there aren't wonderful practitioners everywhere, but New York City, you know, you think, Oh, I'll find the best person, right? So she said, Well, I'll go to a doctor, but I won't come into the city, and I won't go more than 20 minutes or half an hour from my house. But there's a fantastic neurology department at overlook Hospital in Summit, New Jersey, and they specialize in Alzheimer's. Oh no, did she know that? No 15 minutes away, so I paid for an appointment there really surprised. Are we going like you'll see so then she didn't score very well on her initial test, and then after that, she had and all this just takes month and month to schedule, because doctors don't take the anyway. You know how it is. And she had a another she had a brain scan and neuro psych eval, and the brain scan showed some brain shrinkage, which was normal for her age at that time, but it was inconclusive. And in the past couple of years, I think there have been much more conclusive things, because tests that she's had recently are much more she took a blood test recently that confirmed she has Alzheimer's, and he has a marker for Lewy body, but no signs, and she has another dementia called late L, A, T, E. It stands for something with the telomeres. I don't know. Um, oh, either it's a new it's a newly labeled dementia. So now, just last year, she was diagnosed with those things through a blood scan they did like they injected a dye and they did a scan, and then they did the blood test, and then they did whatever.

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Yeah. So in the first round, it came out that she had MCI, mild cognitive impairment, which can go further, or can just stay where it is. But now she has been definitively diagnosed with Alzheimer's, although she seems to be doing okay, she does live on her own.

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Wow. So I was going to ask you that when you showed up at her house, how was it? Was it pretty put together, or were there signs that, yes, she wasn't taking care of things.

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Yeah. So she reads the times every day, and she stopped reading books. She used to read books all the time.

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She was always there were books by her ninth hand. She's an avid reader. So when I went to her house, things were okay. They hadn't like disintegrated. But lately, there are her bedroom was so scary for a really long time, yeah. But her house in general, she has very good taste. She has a very you know, if I come in and put my backpack on the on the near the buffet by the door, can you hang that up, please? I'm like, Oh, my God, you have nine stacks of newspapers on your kitchen table and you can't eat on it. But this backpack is disturbing your esthetic for the, you know, the living room and the entrance way. So she her narcissism and pride keep her the house, but her garage was the tell her garage was scary. You could not get a car in there at all.

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And her bedroom same like was. Her bedroom just stacked with books.

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Her bedroom was is so disorganized. I've gotten her organized a couple of times, but I don't know. I think sometimes she needs something to do, so she disorganizes everything so she can spend time putting it back together. Or, I don't know if that's a conscious I don't think that's conscious, or she starts to look for something, and then takes everything out, and there it stays.

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Doesn't remember what she's looking for, yeah, where she's put it,

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and she has admitted that, you know, she's like, Oh, I spend half my day looking for the thing that I.

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Can't remember what it is so, but I have noticed that she's not showering as often. She has not done laundry in I have secretly done laundry for her.

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Her clothes are dirty, and that was never my mother was, like, impeccably dressed. Yes, that I remember as a kid, even jeans and like a halter, she'd have like, funky earrings and red nails her her hands and her feet. I have said, like, um, let's go get a manicure. No, I don't want to do that. Oh, let's Oh, she had a rotting too. She didn't even care. I said, Mom, your tooth is brown and it looks like some of it's missing. Let's go to the dentist. Oh, it's fine. I said, No, that's unhealthy. That one tooth can rot all the other teeth. We're gonna go get that fixed. So she's, yeah, that's good. Was she willing to go? She was she was good. She has refused to go to follow up appointments for the neurologist. I'm not getting out of bed. It's like two o'clock in the afternoon. It's crazy.

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So, yeah, your mother not showering. And that doesn't that sound like you're mind boggling, right? Right?

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Yes, from what I remember, mind boggling.

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Yeah, yep, yeah.

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She has itchy skin now. And I said to her the other day, she was scratching, and I said, Mom, why don't you just jump in the shower. I tried to make it casual, you know, like jump in the shower. I always feel so much I have I also have itchy, like, I get itchy for whatever.

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It's too hot, it's too cold, whatever I ran, I didn't run, you know, like, whatever. And so I said, Oh, Mom, just get in the shower. You'll feel so much better. It's what I do. I just feel itchy and I just rinse off.

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And she said, Oh yeah, I'll do that. I'll do that. But I know, I'm 100% sure she didn't right.

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My sister was there for for five days, and she said, Bonnie didn't get in the shower once.

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So that's kind of on the newer side of things. I mean, again, it creeps up and you think, Is it me or doesn't like nothing in the shower looks different than it did four days ago. Like, you can usually tell when somebody's been in a shower, or,

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like it's wet, right? Yeah, yeah, yeah. No, none of that, yeah. Do you think she would accept help, like some sort of caregiver in there.

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Well, a year and a half ago, we hired a housekeeper, but my mother followed her around smoking, and so I gave her we had CO we I still wear masks on the train and whatever. And so I gave her some masks to wear that the cleaner to wear. And finally, she was just like, I can't, I can't be in this house. And so she quit. She quit over text, which was sort of shitty. So then we tried to arrange and the doctor said, You need to start putting in place some home care.

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I'm not ready for home care. So finally, one day I I explained to her, I said, Mom, right now, in your present state, talking to me, you don't need a caregiver. You're fine, but the problem with this disease is you go away and we don't know where you go, and you're not you don't know where you go, because you come back and like the stove spin on. Well, that doesn't happen. I said, Mom, it does happen a couple weeks ago I came and I'm sitting at burner level, and I look over and I see that the flame is on and there's no pot. You haven't been cooking something. I mean, obviously at some point you were, or she just turned it on to light a cigarette. You know that action, right? So I said, you know that you don't need anybody when, when we're here doing this, but when you go away, somebody needs to be here for that so that you don't burn your health down, so that you don't hurt yourself a million things. So I've had that same conversation with her a bunch of times, and I think it's starting to chip away.

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That would be pretty remarkable. I mean, in my experience, most people do not accept help, yeah, so we have to, like, creatively, get it in there. Yep, someone, and that's where we thought the housekeeper, like you're saying, like the house gainer, or the driver, or the. Assistant, like, we can't call it what it really is, right?

00:20:04.559 --> 00:20:09.539
But you know, again, she's still really smart, so it's hard to fool

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her. Yeah, know what I mean? Yeah. She just maybe she could do it for you, like for you and your sister.

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Maybe she could, you know, just to make us happy or to give us peace of mind,

00:20:23.660 --> 00:20:40.900
well, this is what she says. Well, what is she gonna do all day? Right? This helper, I said, No, make you dinner. I can make dinner, yeah, but Mom, you don't. You know I do. I do okay, like now she's down to basically microwaving.

00:20:41.799 --> 00:20:51.460
She lost weight. She lost a lot of weight at the beginning, when she was she's 84 now she'll be 85 oh, years old, not pounds.

00:20:51.519 --> 00:20:55.720
No, no, no, oh, god no, okay.

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Yeah, she she'll be 85 in December, when she was 79 ish, right at the start of all this, she like, maybe when she was 80, she got really, really skinny, and we thought she's, how can she, like, she's gonna have a heart attack, you know, like, how can your body, plus She's smoking, and she's like, you know, tiny, and she never was very Big to begin with. But then, then she kind of gained some weight. She gained, like, 12 pounds, and she she's

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thriving. It's, you know, I remember her as being very slim. Yeah, she's

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very slim. I mean, she's even slimmer because, you know, she's old and, you know, your fat just drops away, increases are dropped away. And she just kind of, like, her legs are really skinny now where they used to be fuller. Her butt's really skinny. And she used to have, like, a big, kind of a big butt and tiny waist, but she's very evenly skinny. She's like, little she's a little old lady.

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She's rounded over. She's a little old lady. Oh, she's still wearing fabulous earrings though every day.

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Oh, my gosh.

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So she's a tough nut, you know? I think she wasn't very sweet, like, that's not her nature anyway. She wasn't like a very sweet person.

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She could be kind or generous, but she was never like sweet.

00:22:27.259 --> 00:22:36.200
And a lot of my friend parents become sweet, and then you can kind of reason with them.

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Not, not Bonnie, no,

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no.

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So, yeah, there isn't a lot of reasoning with dementia, no.

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And that is the thing, that's the thing you have to remind yourself. With my grandmother, my mother struggled because, well, they had a great relationship, and it's her mother, but for me, it was my grandmother. So she was always older, even though she was a very young grandmother, she was she was my grandmother. So I expected her to become old and elderly and lose her mind and whatever. And I could always deal with her. I could always, like, say the right thing or whatever. And with my own mother, I had to train myself to not, this is not my mother talking. This is the dementia talking. This is, you know, this is, this is not the same. This is not my mother, right?

00:23:40.880 --> 00:23:47.980
Exactly. She's, yeah, there's someone in my support group who says it's the disease, it's the disease. Like, that's his mantra,

00:23:48.339 --> 00:23:57.940
yeah, yeah. And Jody struggles with that a lot, because your sister, so, yeah, you're the therapist. Who, who?

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But they never got along my, my sister's a wonderful therapist, and she would tell her own self like that, but it's just hard.

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When it's your mother, it's it's just hard, and Jodi doesn't see her as consistently as I do. So you know, my reminder is daily that she's in this state, and Jodi has to, like,

00:24:22.279 --> 00:24:25.460
Yeah, she'll visit once or twice a year, or no more

00:24:25.460 --> 00:24:43.960
than that, like, more than that every eight weeks or so. Oh, wow. Oh, wow. Yeah, I asked her she would come more and and she'll, she'll come and stay for four days. That's great. Four days. Yeah, it's harder. Yeah, it's hard for her.

00:24:44.140 --> 00:24:54.519
Yeah, it's hard for my mother because it's inconsistent. It's hard for my sister because she gets upset because my mother treats her so horribly.

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And and is that lifelong treatment or is that like work? Worse with her dementia.

00:25:01.680 --> 00:25:12.480
Always, they're very similar in their defense. I think Jodi and I grew up very defensive because we were called Stupid a lot, like just a lot of

00:25:13.619 --> 00:25:14.400
I'm sorry,

00:25:15.660 --> 00:26:04.440
sorry, so, but Jodi is more defended. And she and my mother are a lot alike, and they never really got along super well, but in a weird way, they were sometimes closer than Bonnie and I were because I was different. So I understood my mother, because I got how she operated, so I figured out how to get along with her from watching the two of them, you know, the younger not to do, yeah, yeah. The younger ones sometimes have a little more insight in a weird way, even though they're the baby or, I mean, I'm not that much younger than Jody anyway, but you know, you

00:26:04.440 --> 00:26:07.500
got to observe, right?

00:26:04.440 --> 00:26:07.500
So,

00:26:08.759 --> 00:26:10.380
sorry that all made me

00:26:12.240 --> 00:26:16.859
anyway. That brings up, yeah, so much shit, so much yeah.

00:26:17.700 --> 00:26:31.700
So, I mean, which could be a really good segue if you want into your play, because the tagline is beautiful and it addresses this exact issue.

00:26:32.000 --> 00:26:35.720
Yeah, yeah. So sometimes

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you have to take care of the people who didn't take care of you.

00:26:38.960 --> 00:28:21.740
Yeah, yeah. It took a while to get to that. I started writing this play because, I mean, my mother. My mother's kind of hilarious in some of the things that have gone on, like her responses to things, but I would go to her house or spend time with my father, and then I would come home and I would tell my husband, I really, I have to just digress for a second, one of the questions you have lifted is like, how do you cope? And for me, not talking about it to everybody, but really only just telling my husband and and and talking to Jodi on the phone, those two people who Ron, who loves me and is on my side, but also can be very objective and say like, you know, you might, you're overreacting here, or, you know, like he'll, he, he's really a good truth teller for me and and Jody, who can say, oh, my god, yeah, you know. And just hear our mother, yeah, Bonnie, right. And that's our shorthand. And we and we can laugh or find the humor or get mad for each other, you know, on each other's behalf. And so those two are the way that I cope, and then I'm dramatic and an actor and performer. And so I would tell these stories, and people would say, Oh, my God, that's a monolog. You know, Ron kept saying, that's a monolog.

00:28:18.240 --> 00:28:21.740
Or he'd say, Tell my cousins.

00:28:21.740 --> 00:31:20.960
Like, tell your cousin what happened the other day with your father. And I would tell and they'd like, crack up and and so Ron kept saying, You should write these down. These are a monolog, you know, blah, blah, blah. And so finally I started writing them down. And then somebody asked me to be in a creative women's group, and some of the people were writers or musicians, songwriters, like some visual artists that worked with paper and fiber arts. So there were, like, six or eight women. Always, not eight, probably five to six women at this woman's house that we would go to once a month, and then we would each go into different rooms and work on whatever thing, and then we'd come back and share. So when she invited me to be in and I was like, Mary, I don't know what I would do, like, what, what? I don't would I sew something, but I don't know what I would do. And she said, Well, Ron, seems to think that you, you know should be writing down these monologs or something. And I was like, okay, okay, so I would go once a month, and I would sit in this room with a beautiful view, and just like they would pour out of me, and then I'd go downstairs and I'd read a section. I don't consider myself a writer. I haven't I've written things at gunpoint, you know, like you have to write a monolog for this acting class because my teacher told me to, you know, so, hey, I can write a good essay. So like, beginning, middle, end. Here's my monolog, whatever. But I don't write, I don't journal, I don't I'm not a writer, but I have written some. Things, they come to me like as a whole piece, and then I write it all out, and then walk away. So writing like this once a month to sit down to write, I didn't know if I was going to be able to do that, but, but I did. And then in November, I finished it around Thanksgiving, and then in January, I had a reading of the play, and then I started working on some of it in acting class, and somebody saw me and said, Will you do this play for the solo show? So that's how I ended up doing this play. And the question kept coming up, like my acting teacher read the script, and he said, Well, if you could sum it up like, you know, like Tootsie, tootsies about a man who became a better man by becoming a woman, you know, got it, and I couldn't. I was like, Ah, I don't know. So I just started brainstorming, and Ron is always my backboard, and we were throwing things back and forth, and I said, I don't know, sometimes you just have to take care of people who didn't take care of you. And Ron burst into tears. He was like, Oh my God, that's it. That's so true.

00:31:17.400 --> 00:31:28.819
Because he also took care of his parents when they were dying, and his dad had Alzheimer's, and so we had to do that from far away anyway. So that's

00:31:29.420 --> 00:31:34.039
how it's so poignant and so true for many people.

00:31:34.339 --> 00:32:30.200
Yeah, and, and since I put the like, the post, the show poster out, I was so surprised that so many people are like, Oh, my God, that was my story. Yeah, yep. So that my play. It's, I talk about my father is sort of the first section and and my mother's interwoven in there, sort of like I said, at first, I was just dealing with him moving back east and trying to, like, cultivate some kind of relationship with him, because he wasn't a very good dad. Isn't that nice person, but he wasn't, like, particularly good father, and he really didn't know my kids, and I'm a big family person, and then I deal with, like my mother, and then her first diagnosis of MCI, that's as far as I get, just to there.

00:32:30.799 --> 00:33:18.480
So it's like this little five year contained period, and you play all the parts. I play, all the parts. Wow, yeah, I play body. I play Jodi, who talks up here little bit just like me. We have the same voice, but she's a little bit higher. I play my father, who didn't really talk like this, but it's hard for me to be a man, so this is the voice I found for him for the play. And I play Dr Patel. And Dr Patel is the one who gave Bonnie the initial quiz, you know, church Daisy, like,

00:33:22.079 --> 00:33:25.460
yeah. So, and how about you? Do you play you?

00:33:25.638 --> 00:34:27.679
I play me. Yes, me. And I have physical postures for everybody. And in rehearsal, sometimes I'll I'll be speaking like me, but I'll be in the wrong posture, and I'm like, oh, and they're all set a chair down, a friend of mine, who's a wonderful actor and director, is directing me because I can't see myself like I've written it and I'm performing it, but I can't I can't see myself. I'm not a person. Some actors can direct themselves. I'm like, Just tell me what to do. So I I pulled a chair up, and Lori said, the director said, Who's that chair for? And I said, I said, oh, there are two chairs here. And she said, Who are they for? And I said, Me and Bonnie. And she said, you and you right. I could be on one chair. I don't actually need another chair, just becoming these people. So in my mind there are two of us, but there's actually they. She only exists in one body.

00:34:27.679 --> 00:34:30.438
Just you do you switch?

00:34:27.679 --> 00:34:33.378
Have to switch chairs when you become different people. Yes, that's so funny.

00:34:33.500 --> 00:34:43.599
I actually just have to adjust my posture and angle myself. But in my mind I'm sitting in a different chair. So I was like, Oh, I have to have two chairs. She's like, why?

00:34:43.599 --> 00:34:44.380
There's only one of

00:34:44.438 --> 00:34:46.719
you. Only one of you.

00:34:44.438 --> 00:34:46.719
Oh, that's hilarious.

00:34:47.139 --> 00:34:47.619
Yeah.

00:34:48.639 --> 00:34:54.579
Sorry, no, that's okay.

00:34:48.639 --> 00:34:55.119
Oh my gosh. So how long is the show

00:34:56.440 --> 00:35:19.079
in its original, intended form? It's probably like an hour and 40, but for this iteration, because it's a solo show, and I only had about an hour, it's very pared down. I did a lot of trimming. There's a lot of funny stuff, but I don't have time for all of it,

00:35:19.079 --> 00:35:25.340
so Well, that's what I was going to ask you. So, yeah, is there humor woven it?

00:35:21.920 --> 00:35:26.059
Because this is so serious and so sad,

00:35:26.119 --> 00:35:43.360
right? It is so sad. But like, if you can't laugh, I'm right. I you know, yes, it's tragic that my mother put bacon in the dish cabinet and then tasted it, who knows how long it was in there, and then ate a piece,

00:35:44.440 --> 00:35:47.380
cooked it, and then put it up. It

00:35:47.380 --> 00:35:59.079
was a Trader Joe's cooked bacon in a box. Oh, ah, supposed to be refrigerated, so at least it was cooked. It wasn't raw pork. It was cooked.

00:35:54.219 --> 00:36:24.860
I do her grocery shopping, so I know when things go into the refrigerator, and I went to look for a bowl, and I opened the cabinet where the bowls and like some pots and stuff are, and I was like, Oh, I see the bacon box. And I think, Well, maybe it's empty. And she thought it was recycled, whatever. And I take it out, and I said, she said, What, what? Oh, what. And I said, Oh, that's bacon, mom.

00:36:25.219 --> 00:37:14.460
And I said, I'm gonna throw this out. No, I'm sure it's good. She rips open the thing, pulls out the bacon, undoes the plastic, reaches it, and I said, Mom, it was kind of an orangey color, like, not the color of cooked bacon, which can be kind of orangey, like out of the pan, but this is typically just like, it looks like salami, almost like that, reddish dark, so it had like orange on it. And I'm like, Mom, don't eat. She puts it right in her mouth, chews it up. I think it's fine. I said, I be really wasteful, and say it's not fine and throw it out. She was like, Fine. Do what you want. She was really mad. I was like, Oh, my God, my mother's gonna die right here now, from like, eating old, unrefrigerated bacon, like, but it's hilarious.

00:37:14.460 --> 00:37:17.280
I mean, it's horrible, but, like, you can't cry about that.

00:37:17.280 --> 00:37:25.519
That's just like, and you know what? If she did die from that, it would be horrible. But, like, what's the path forward for her?

00:37:25.519 --> 00:37:33.440
It's not like, better. So you have to, like, okay, so she smokes a million cigarettes.

00:37:33.440 --> 00:37:39.739
Like, yeah, you're gonna deny her smoking cigarettes at this after decades? No, yeah,

00:37:39.920 --> 00:37:49.480
and she was 14 years old, yeah? Well, you know, 70 years of cigarettes, if she's not dead by now from that, then that's probably not what's going

00:37:49.480 --> 00:37:51.340
to kill her.

00:37:49.480 --> 00:37:58.059
Yeah, it's amazing. The weight loss, that big period of, you know, that period of a lot of weight loss that she didn't have some sort of, can't lung cancer,

00:37:58.119 --> 00:38:29.300
I know we really, it's, she's like the Energizer Bunny. It's crazy. Wow. So yeah, so the play does have a lot of humor. It had some moments of like, when we realized this was a bad thing that I didn't say she sort of how we found out everything was like, her electricity would be off for days. She'd say, oh, it's something with the town. Then she didn't have water. Oh, it's only on my side of the street.

00:38:29.900 --> 00:38:41.019
Oh, my phone line, isn't I tried calling you, mom. Yeah, the phone lines were down. Something on in the neighborhood, something on my side of the street, just my house, whatever.

00:38:41.500 --> 00:39:10.800
And Ron kept saying, has she paid her bills? And I'm like, Bonnie always pays her bills, like I was so defensive. And then, because we had, there were so many instances, like, Finally, when she didn't have water, I came over, she was making coffee with bottled water and and I texted Ron, and I was like, Bonnie's making coffee with bottled water. And he said, probably hasn't paid her bill.

00:39:07.619 --> 00:39:27.199
And then he said, I'm just saying. And I was like, hmm, it was the first time that. I was like, Oh yeah, I see a pattern here. So because you don't want to be the kid who's just assuming their parent is old and out of it, you know what I mean?

00:39:24.739 --> 00:39:27.199
Like, yeah,

00:39:27.199 --> 00:39:30.980
sure. You're holding on to who your mom has always been, yeah.

00:39:30.980 --> 00:40:18.239
And I don't want to Yeah, and she needs to be the queen bee, like she doesn't know who she is without that. So I sort of have internalized that somebody said, how can you deal with your mother? And I said, a close friend said that to me, and I said, it's an exercise in making myself small. I just go there and I make myself small. I don't tell her about anything big that I'm doing. I don't tell her. Like, I'm successful in any way. I just let her, you know, I'll talk about something that I saw or did, and I'll let her just talk about my father or the five or 10 stories that she repeats over and over, because it's like, why poke the bear?

00:40:16.019 --> 00:40:18.239
You know,

00:40:19.440 --> 00:40:26.119
it's not worth it for me, all right, yeah. And she needs to be the right big person in the room,

00:40:26.239 --> 00:40:42.400
yeah, right. And I don't, at this stage in my life, I don't need my mother's approval, not enough therapy, you know, right? My mother's approval. If she doesn't approve of me, I still bring her groceries like, you know, whatever.

00:40:43.239 --> 00:40:46.360
Wow, so she wasn't paying any of her bills, no.

00:40:46.358 --> 00:41:06.179
So Jody called the town, she looked up the town record, because they're public, and she saw that Bonnie hadn't paid her property taxes in more than a year, and then lien on her house. And my mother owned her house for a long time. She had stopped paying mortgage, like, finished paying mortgage.

00:41:06.179 --> 00:42:13.079
The house was hers, like, years and years ago. And so Jodi said, we have to tell her. We meaning you have to go tell her. So. So I went over and I said, Mom, you know there's town that's gonna take your house. And she was like, what? And I said, Yeah, like, it could be, like, $40,000 I don't know what your land taxes are. Do you have enough money to pay for that? And she's like, I don't know. And I was like, you don't know how much money you have in the you don't know if you have $40,000 to your name. And so Hi. Well, so we, I said, I'm coming over and we'll get to the bottom of this. I said, I need you to I had given her a list of things to fill out, like, because a friend of mine said her parents lived in Idaho, and she wanted to be able to help them. And she was like, all of a sudden I realized, I don't know if they subscribe to magazines or what health insurance they have, or what medications they're on, or where they bank or who's their vet or and I was like, Oh my God, I don't know any of those things.

00:42:13.559 --> 00:42:16.679
So I had made you like, power of attorney or anything.

00:42:16.679 --> 00:42:37.400
Oh no, no, no, no, no. So I made a list for her, and I said, I need you to fill this out. And then she just didn't. And when I I found it in a pile, and I was like, Mom, you need to fill this out. And she was like, leave me alone. And then Jodi found out there was lean on the house. And then I walked in and I said, Mom, you never filled that thing out.

00:42:37.400 --> 00:42:47.380
Like, let's fill it out, and then we'll be able to see what's going on. And she said she texted me and said, I've been up for two days. I can't do it.

00:42:44.559 --> 00:42:47.380
I've gotten as far as I can get.

00:42:47.380 --> 00:43:07.079
I can't do it. I can't fill out the form. And that's when I was like, Oh, that's not good. So I came over to her house and I went upstairs. She said, I put everything upstairs that you'll need. Did you find anything?

00:42:59.739 --> 00:43:34.699
There was a folding table with a pile of mail like this. Oh my gosh. Below that an unopened pile, unopened landslide of mail. Oh my goodness. And on the ground, three suburban size laundry baskets full of unopened, some opened but not responded to magazines, coupon, utility bill, credit card, you name it. Two years worth.

00:43:35.418 --> 00:43:43.478
She just stopped paying everything. Wow. She just opted out open it, yeah. And she couldn't, she couldn't do

00:43:43.599 --> 00:43:53.320
it. She couldn't do and she couldn't ask for help, right? Deal with it.

00:43:46.179 --> 00:44:36.079
Proud, yeah. So I oh my god. I wanted to lie down on the floor and cry, but I just knew, just like, do it. So I set up camp on her dining room table, and I spent the next four months at the dining room table, my job, my kids and my mother. So every day I was in New Jersey for three or four or five hours sitting at that table going through the mail, got the Lean taken care of, got power of attorney, got put on her bank account, started like, eventually I asked Jody to deal with the bills, because I was like, I can't, it's too many things.

00:44:36.500 --> 00:44:41.139
Thank God you did that. Yeah, yeah. Thank goodness. Oh my goodness, yeah,

00:44:41.378 --> 00:44:46.119
but at the beginning, I couldn't wrap my head around it enough to delegate anything I just needed.

00:44:46.179 --> 00:45:52.059
I couldn't see all of it, you know. And then we started taking stuff to the dump, but her basement and her garage were like a hoard and like floor to ceiling stuff. Yeah, yeah. And then that got taken care of this year, the garage and the basement, because she would not, she just refused to deal with it. And so there was a little flood. One of her water heaters exploded, not her fault, just faulty mechanism, and water seeped out into the basement. So I was like, Mom, we got to get all this up. So in order to get things out of the basement, we had to get things out of the garage. So we excavated 45 years of piled up shit from the garage. Oh my gosh. And then we started on the basement, 45 years of piled up shit from the basement, wow, and she was she come down, she didn't really always know what was going on.

00:45:49.239 --> 00:45:52.059
Explain to me what's happening.

00:45:52.298 --> 00:46:30.858
Explain to me, what are you doing? You can't throw that out, mom. It's a poster that your ex boyfriend, 10 year old, made in eighth grade. She's 40 now we're throwing it out. It's magic marker on poster board. You don't need this. Fine, fine. Do what you want. I was like, Okay, I will. So even that was like pulling teeth, oh my gosh, but yeah, her house had been neglected. Or every, every, everything,

00:46:31.280 --> 00:46:40.159
right? Every, every, everything, her teeth have been neglected, her bills, everything, every area of her life sounds like her nutrition,

00:46:40.280 --> 00:46:43.659
Yep, yeah, no nutrition. There's no nutrition.

00:46:43.780 --> 00:46:55.840
No, there's coffee, cigarettes, chocolate, hmm, and like salad and lamb chops, but mostly coffee, cigarettes and chocolate, the three food groups, right?

00:46:55.840 --> 00:47:00.059
I was just gonna say, wow, oh

00:47:00.059 --> 00:47:05.159
my goodness, yeah. So do you bring some of this into the play?

00:47:05.760 --> 00:47:18.960
Yes, a lot of this is into the play, the recent stuff, the basement, the the hoarding. I I really kept it to just the first part of it.

00:47:14.400 --> 00:47:18.960
Oh, that could be act two.

00:47:19.320 --> 00:47:23.719
Yeah, it's after intermission, yeah,

00:47:24.679 --> 00:47:32.059
after you, after you all draw your eyes or crying, you'll see what happens next? Yeah, I think so

00:47:32.420 --> 00:47:34.880
that's a lot. It's a lot,

00:47:35.900 --> 00:47:45.519
a lot. And the thing is that people, people who are going through it, get it.

00:47:41.260 --> 00:48:07.679
But I've had a lot of friends say, why don't I come over and help you with your mother? Like, it's not like that. It's not like we're visiting her at an old age home, and she's in a wheelchair, and you want to, like, talk with her. There's no like visiting with her, saying, and she's not nice, so like, which one and the house smells like an ashtray. Why would you want to come over and do that?

00:48:07.860 --> 00:48:17.940
But they don't know that, because I don't really, I mean, until this play, I don't really share that because, yeah, they don't get, like, people, you know, you

00:48:17.940 --> 00:48:21.019
don't get it.

00:48:17.940 --> 00:48:27.139
It's true. Yeah, and now, if you were in like, a caregiver support group, those people get all of it, right? They get it, yeah, right,

00:48:27.860 --> 00:48:55.059
right. And somebody suggested, the neuropsychologist where my mother was tested, said, you know, maybe you should come and and be in the support group. And I was like, I don't, I don't have time to be in my support group. Is on my way home from my mother's venting to my husband or my sister. I don't have time to drive to, like, summit New Jersey to be in a support group.

00:48:51.099 --> 00:49:13.679
Now, your other people complain about shit. I totally get and I'd be like, I get it. You're right. Yeah, you get me, I get you exactly. We're on the same road, yeah, I get Yeah, like, I don't know, yeah, helpful. I'm sure it's helpful if it's if it's convenient.

00:49:14.159 --> 00:49:26.360
Oh, yeah, absolutely. And now there's so many caregiver support groups on Zoom, so it could be convenient one day. Yeah? So you know it might be for you, it might never be for you. That's fine. Yeah, it's out there. It's a resource.

00:49:26.780 --> 00:49:29.119
Yeah, key writing is good coping skill.

00:49:31.760 --> 00:49:39.139
Okay, so we should just say your show is called dementia and other exit strategies. Yes, it's coming up.

00:49:39.619 --> 00:50:01.559
Yes, September 26 and 27th Yes, right at IRT Chris on Christopher Street, yes. And yeah, 154 I thought it was 151 Yeah. 154 Christopher Street, yeah. And if you want to see the show, get online and buy a ticket or just show up. At the door, yeah. You can

00:50:01.559 --> 00:50:16.199
show up at the door, or you can go to my Instagram, which is mad J moves, M, A, D, J, a, y, E, M, O, V, E, S, all one word at Mad J moves and it's in. There's a link in the bio to that.

00:50:16.679 --> 00:50:28.400
We'll put that in the show notes, yeah, and along with your poster, so that people want to see. Yeah, and will this be showing like, elsewhere, again, somewhere else?

00:50:28.400 --> 00:50:45.579
Possibly? No, I don't know. It's the first iteration. I'll see how people respond to it. If there's response, I'll keep working on it. I mean, I'll probably keep working on it anyway, just for myself. But yeah, it's, yeah. I mean, it

00:50:45.579 --> 00:51:05.219
sounds like it's good for your mental health, for sure, it really is. It's I was good outlet. Yeah, you were surprised, yeah, I was surprised that it's very cathartic. Yeah, Ron was right. Keep writing.

00:50:57.880 --> 00:51:17.280
Yes. Thank you. Yeah. It is so great to see you and great to hear this story about a woman that you know I knew decades ago. I'm sorry, right? I mean, it's

00:51:17.699 --> 00:51:22.280
Yeah, I mean, she was a very dynamic, yeah.

00:51:22.579 --> 00:51:26.119
How beautiful, exactly. So smart, yeah,

00:51:26.480 --> 00:51:32.239
and she you Oh, and you were one of her favorite people in my life.

00:51:32.300 --> 00:51:37.340
So well, it goes yes both ways. She was like a second mom.

00:51:37.460 --> 00:51:40.400
So yeah, that's how I felt.

00:51:41.599 --> 00:51:43.900
So thank you.

00:51:41.599 --> 00:51:43.900
Thank you for coming here today.

00:51:43.900 --> 00:51:51.820
And I know this was not easy, but I really appreciate you coming and sharing your story.

00:51:47.139 --> 00:51:51.820
So with all my heart, thank you.

00:51:52.000 --> 00:51:53.980
Thank you, Barbara. I really appreciate it.

00:51:56.500 --> 00:52:02.820
Thank you for joining us today on another episode of dementia discussions.

00:51:58.960 --> 00:52:35.960
If you're a caregiver or know someone who's a caregiver that would like to be a guest on the show, please call me at 310-362-8232, or go to dementia discussions.net, forward, slash contact, and let me know. I would love to have you remember that you can follow dementia discussions on Apple podcasts, Spotify, Google podcasts and many more. If you listen on Apple podcasts, it would mean a lot if you would leave me a review. For any other information about this podcast, please visit me@dementiadiscussions.net

00:52:38.300 --> 00:53:00.300
and please share this podcast with someone you know, if you think it may help, thanks again for listening, and I'll See you here again next time on dementia discussions. You I think.

Dementia, Caregiving & Exit Strategies: A Conversation with Madeline Jaye

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