Sept. 11, 2025

A Son’s Devotion — Steve Lavapies on Navigating Caregiving, Decline, and Connection

A Son’s Devotion — Steve Lavapies on Navigating Caregiving, Decline, and Connection
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Season 4

I’m honored to welcome Steve Lavapies, a devoted son and a thoughtful member of one of our UCLA caregiver support groups. Steve shares the deeply personal journey of caring for his mother, a brilliant and resilient woman who immigrated to the U.S., became a physician, and faced a long and complex decline due to physical illness and dementia.

In this episode, Steve opens up about the realities of caregiving as an only child, the emotional and logistical weight of moving his mom through assisted living, memory care, and ultimately hospice. We talk about guilt, grief, resilience, and the hard but beautiful truth that connection, even in decline, is possible.


Episode Highlights:

[1:20] - Introducing Steve, a fellow UCLA support group member and caregiver for his mom
 [2:31] - A portrait of Steve’s mom before dementia—her bold immigration story and medical career
 [4:33] - Moving to LA to be closer to family and transitioning into assisted living
 [6:27] - Early physical decline and recognizing the signs of needing more care
 [8:39] - The beginning signs of cognitive decline during the pandemic
 [12:10] - A shocking moment during cognitive testing and a mindset shift in caregiving
 [14:15] - Navigating caregiving solo as an only child
 [18:59] - Dealing with facility limitations, caregiver compatibility, and daily oversight
 [20:46] - When her sharp personality began to fade, and what Steve missed about it
 [25:06] - The transition to memory care—logistics, emotion, and adaptation
 [29:46] - Watching physical abilities diminish, and the bittersweetness of presence
 [33:28] - The parallels between dementia care and parenting, and giving yourself permission to rest
 [35:49] - The fall that changed everything and led to hospice care
 [41:46] - Experiencing grief, guilt, and—eventually—relief
 [44:15] - The value of support groups and shared stories in the caregiving journey
 [47:18] - The moment of recognition in community—“We had the same mother!”
 [48:13] - Reflecting on Steve’s strength, his mother’s legacy, and the healing power of story


Links & Resources:

If this episode touched you or helped you feel a little less alone, please consider rating, following, sharing, and reviewing the podcast. Your support makes a world of difference, and helps this community of caregivers continue to grow. Thank you so much for listening, and I’ll see you next time on Dementia Discussions. 💙

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In our support group, people say, you know, take care of yourself, because to have those hours away from thinking about that, like I said, it's overwhelming to be able to just take some time to yourself and you know, like, make yourself a meal, take yourself out to eat or just sleep. You know, whatever it is is so important.

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You Hello

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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 Steve, hello and welcome to dementia discussions, the podcast for and about caregivers today on the show, I would like to welcome Steve. Steve attends one of my caregiver support groups through UCLA, the Mary s Easton center for Alzheimer's Disease Research and care at UCLA. And it's been, really it's been, Steve, it's been a pleasure to know you over the last I don't know feels like the last few years, but I could be wrong. Steve, welcome to the show.

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Thank you for having me. Glad to be here.

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Absolutely

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So and funny that I should run into you having not met you over the past few years ever this support group has been since covid, and we've been online, and then I run into you this morning. Yes, Culver City, what like? How random is that

00:02:16.680 --> 00:02:18.960
it's in the stars? I guess so.

00:02:18.960 --> 00:02:31.400
Yeah, I guess so. Okay, yeah, so you came to support group because you were the caregiver for your mom. Tell me I never met your mom. Maybe just tell me who your mom was before dementia.

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Okay, well, my mom was a really interesting person. She was a foreign born and immigrated here in the 50s.

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She had a medical degree, and she wanted to become a doctor, and she did. And so she thought that, you know, America at the time, was at the forefront of science, and so that's where she wanted to build her career, which was an incredible, bold move, if you think about it, for a woman in that time. And so obviously, she was smart, she was very supportive of women.

00:03:10.919 --> 00:03:43.479
She was an OG feminist, you know, from the get because she experienced a lot of the prejudice and patriarchy in the medical profession. You know, we're talking about the 50s and 60s and 60s and 70s. So she was when I asked her, What was the biggest thing you saw in the time you've been since you've been in America? And she said, the women's rights. She was charming, generous, but she also was stubborn and had quite a temper. She moved. I grew up.

00:03:43.840 --> 00:03:52.300
Just going back a minute, did she come to America by herself? Right? Or, oh, wow, yeah, yeah, and not with her family. Oh, I Met Your Dad here.

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Yeah. So she settled in West Virginia and Ohio, in the Ohio Valley there, and that's where I was born, and and she went to med school.

00:04:04.139 --> 00:04:33.079
Yeah, she had gone to med school in Turkey, and she lived there and built a career with with my dad, and, you know, did really well and had a good life. And in 2015 my dad died, and we have twin daughters, and so she wanted to be close to them, so she just picked up and moved her stuff, you know, didn't even bring all her stuff, but just moved to LA to be close to us.

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And so she

00:04:33.199 --> 00:04:54.100
lived there. So you grew up back east, yeah, and and came out here, married two kids, yep. And she's living, doing, working right as a physician. For what kind of physician? Was she family physician? Yeah, I say, and your dad? Was he also a family fashion? Yeah, oh, the two of them are dogs, I say.

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So anyway, she, yeah, she, she was there, and then she had retired, you know, a. Several years before that, but, and then when my dad died, I was surprised, because she had such an active social life there. But she really wanted to be near the grandkids, you know, and so she moved out here. And so that would have been 2015 stayed with us for a little bit, and then in 2016 moved into an assisted living, independent living facility in Santa Monica.

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And as a doctor, she knew that she was physically in decline at that point. She wasn't really exhibiting any kind of memory loss or anything like that, but any kind of cognitive decline.

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But she knew that she couldn't be on her own in her own house.

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She had really bad arthritis, and so she was in constant pain from probably her 60s till the day she died. And she took a lot of medicine for that. And because of that, she lost the ability, slowly lost the ability to walk. You know, she went from sort of staggering around to a cane to walk her. And then finally, a wheelchair. And you know, she went through a couple stints of rehab to try to get her walking again. And it would work for a little bit, and then she would, you know, just not be able to, it's just, and so she wound up just in a wheelchair for the past, for the last three years of her life, I guess.

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Yeah, so that's how it came to be out here,

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I see, and she came out here and she was independent at the time 10. That was 10 years ago,

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yeah, yeah, she was, she was independent. But she knew that she was and I knew because I'd seen her in her house. I mean, she really didn't walk well, and I was really worried that she was gonna, you know, fall and hurt herself, or, you know, have an accident. And like a lot of people, she didn't want to, you know, start using a cane, until she really just realized she had to, you know, the pride thing. Yeah, right.

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And so she, but she realized it.

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I mean, she knew she she had, I mean, she's had patients like that all her career, and so she knew that the sides. And so I was grateful that she was, she did that and and I was also, we were very lucky because she was able to find a nice place to stay, live in, you know, residence. And I know that a lot of people can't afford that because it is really expensive, especially in town like LA. We were really glad that that, you know, that worked out, and I would see her several times a week, and the

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assisted living.

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I mean, it's amazing that most people do not go like it's not their choice to go to assisted living. It's sort of put upon them. Yeah, so it's really good that your mom made this decision on her own to go, and because of that, she was probably happier there.

00:07:46.660 --> 00:08:03.000
It's really true. I mean, yeah, from, from, like, a lot of people I've talked to, and a lot of people in group you know, the people who you know, their person they're caring for, does not want to go, and it's like they won't go until they're kicking and screaming, or just, you know, aren't aware, or whatever.

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And we bypassed that,

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you know. So she had a pretty good life at assisted living while she was there,

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yeah. And it was started out as pretty much independent living, you know, she could do everything. And then it was just gradually over the, oh, I guess five or six years, you know, physically, she was just starting to decline and gradually not be able to do the ADLs and one first be one thing, then another thing and another thing. And then they pretty much moved her into the assisted living.

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Started giving her more care, more care. Yeah, yeah, helping her with bathing, helping her with dressing, sorts of

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stuff. Yeah, all that stuff, all that stuff.

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Then at some point you started noticing that she was having trouble with her memory.

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Well, yeah, it was right around when covid started. She She was definitely slowing down in terms of, you know, carrying on a conversation. She wasn't speaking as well. She never got to the point where she didn't recognize me or the family, but she eventually became, you know, like she would look at a picture of her and my dad and say, Who's that guy,

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you know, and English wasn't her first language,

00:09:13.980 --> 00:09:25.879
no. And interestingly enough, when her relatives, like her niece or nephew would would visit from the old country, and they would talk in Turkish. She was much sharper,

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yeah, she could remember things, yeah. I mean, you know her language. I mean, her language was sharper, yeah, yeah, it

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was, it was, it was really extraordinary. I mean, I don't speak the language, but my relatives said that, and they were like, she has to speak that more often because it's obviously stimulating her brain. And okay, so, you know, I would get together with other friends that we knew, you know, who were Turkish. And so they could, she could just, like, work her language, and that really helped. So eventually she was still. At the Santa Monica residence, and I noticed that, you know, she was having repeating herself a lot in conversation, telling the same story in the same within five minutes, just forgetting everyday things, not not, not old stuff she could remember.

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You know, it's a thing that happens. You can take a rumor stuff for high school. But so,

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and was that surprising to you? Is that, like, oh, that's just not my mom. She's usually so sharp, like, she's so on It usually,

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yeah, she it was, but it was gradual, so I got you kind of get used to it.

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And the one thing that I realized is that you have to have a lot of patience for people who you know are going through that, because they're, they're not doing it on purpose.

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And like, like people say, you know, you say, it's the disease, not the person, right? And it was, it was gradual. And my daughters, who would see her regularly too, sort of were very good. And they, know they but they noticed it too, you know.

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And so I guess I heard from the caregivers at her facility that, you know, she was still taking her own medic medicine. And I heard they got her out of bed and made her bed, and they found all her pills, just like strewn about the sheets. And that was very worrisome, because they said, Okay, she should not be take in charge of her own medicine anymore. And we now, and I was always providing her with the medicine, because I would get it from a pharmacy, and they said, just let us take care of all of it. And it was like, it was very aggravating and a lot of work to do. And I was really happy that that they took that over, but it was worrisome because I thought, okay, if she can't do that, then you know, what else is she not safe to do? So it was around that time that the dementia program at UCLA, we were referred to them by her gerontologist. She was in the UCLA health program, so all her doctors were there, and she

00:12:06.480 --> 00:12:10.019
her geriatric internist, you mean, yeah, yeah, okay.

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And so, you know, she, she recognized some things that were going on with her, and said, you know, why don't you talk to somebody at dementia clinic? And so we did, and it was, you know, during covid time. So we were on Zoom, and I remember being in a room with her, and like, like I said, it was a gradual thing. I knew that she was in some decline.

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And then when she took the test, the cognitive test, she couldn't read a clock, you know, like when they said, Can you draw a clock at that says 1010, she couldn't do that. She couldn't recognize, you know, simple drawings of, you know, animals.

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And are you surprised? Were you Yeah, I was. I was stunned, because I didn't realize the extent of her decline at that point, and because I think I, you know, I did some reading, and I've, you know, been talking to people, and I said, I thought, Okay, this is what the client is going to be like, you know, she's going to, she's going to forget, you know, it's gonna be really obvious that she's gonna forget people's names and that sort of thing.

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And it was like, Well, yes and no, it wasn't really that obvious. But when we when she took the test, it was shocking to me, because she really was having a hard time really simple stuff, and that required a mindset shift in me, because I couldn't have the same kinds of conversations with her anymore.

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I realized that, you know, she would get confused and she would get upset about things if we went down, you know, had certain conversations, you know, certain topics,

00:13:48.460 --> 00:13:51.519
like about what, like about money, or like, about

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what, yeah, you know, she would, well, I tell you, she was very, very adamant about tying up all her business loose ends before, before she died, and I had power of attorney for healthcare decisions, for financial decisions, and that was a lot to take on, and

00:14:12.840 --> 00:14:15.000
it was right. We didn't mention that, you're an only

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child, right? I didn't have any other help, yeah, no brothers or sisters, no other people out here, who knew her, you know, besides the people at her facility, it's and here, it's just being my wife and my twin daughters and who were supportive. But it was all on me, and it was, it's all new stuff. You know, I'm good at Matt and I'm good at figures, and I'm very organized. And even for me, it was overwhelming sometimes, because there was just so much to do because, you know, it was a financial stuff.

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He was like, you know, we have to sell our house, you know, the house I grew up in and she, you know, or something like that, I had to that was all on me, because she had always assumed that she was going to eventually go back and clean out the house.

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Years, and then, you know, moved back to LA and lived out the rest of her days here. But her plan, that was her plan. Gosh, so because of covid, none of us could travel right for a couple of years. And in that time, her health had declined enough physically that she really couldn't get on a plane. And when I eventually went back, she was still alive. When we went back to clear out the house in 2022 it was, it was like walking into a ghost house because she hadn't been there in six years.

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And it was there was like a coffee mug, you know, with as if she had just been there. Yeah, she just got up and let went to the airport, you know, and left.

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And, I mean, it was nobody cleaned, really, or, you know, and it was, it was really weird.

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It was like, it was like some pop apocalyptic show or movie, you know, where, like, people just left, you know. And so all of that stuff was, all fell on my shoulders, and I just saw it as a responsibility. You know, I just like, I this is what I'm going to do. And I took a I looked at it as my job. I looked about, I looked at all that stuff, and, you know, I don't have to tell you, but it's not easy negotiating or navigating health care and insurance and all those different kinds of companies. You just have to, you know, like, I have to make this call today, and I just have to whatever obstacles are going to throw at me. I know they're gonna come and you keep going.

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I'm just gonna deal with them, whatever it is, because there's no option. I mean, nobody do it, and nobody knows enough about it to do it, and nobody else can be trusted to do it. So that was, that was basically my life for like, five or six years, just taking care of all that stuff

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and wrapping up selling everything

00:16:51.580 --> 00:16:58.480
her, yeah, any business interests, a properties, anything like that.

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And, you know, some of that, some of it was like I was aware of it. But, you know, I might have been stuff that had they, you know, like deals or something from, like, the 80s or something. I oh my gosh. Did you find out about things you had no like, Well, I mean, counts or, yeah, investments that you had no idea. I did. I mean, nothing.

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It wasn't like I had this. I found this, like, account that I, you know, had billions of dollars in it I didn't anticipate, but wish. But you know, just getting your handle around these, getting your mind around all this stuff, was very time consuming. And taxes, yeah, but ultimately, ultimately, I I felt like I learned a lot and but it was emotionally draining, and I was very fortunate. Unlike a lot of people I know, like in group that we she was able to be in a facility. You know, we'd have a lot of room in the house, and wasn't really a good option for her to stay here, because she needed the physical care.

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And we were very fortunate that she was able to find a nice facility. And like I said, I would still see her regularly, you know, you have to work or drop before work, whatever it was. And on the weekends, I would take the kids and you know, so there was a lot of time spent thinking about her, even though she wasn't right, you know, in our proximity, there was a lot of, you know, things like, even, no matter how good your facility, your blood is, and there's details that have to be covered. Like, you know, a caregiver, maybe she's been buzzing for a caregiver for like, an hour, and nobody's showing up, you know, and she has to go to the toilet or or, you know, whatever. She called me in the middle, like, I'd be, like, in a meeting or something, and she called me, and I said, you have to, you have to contact the staff, you know? And this would happen regularly, like, on daily basis. And, you know, I really like the people who work there, and I think the people who do this kind of work are saints, but people get overwhelmed. There's never enough staff, right?

00:18:59.859 --> 00:19:03.960
And especially during covid there, oh, yeah, notoriously understaffed.

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Yeah, really understaffed. Yeah. You know, fortunately, she wasn't in really bad shape then during the first part of covid, but it was just like a daily, almost daily onslaught. So I had, there's this vigilance that you have to have, you know, like, you know what? You can't have that caregiver taking care of her.

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She really hates her. She's probably she seems to be a nice lady, but she does not get along. My mom does not like her, and my mother back in the room.

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Oh, my God, my mom is as for all her good quality, she had a temper, and she if she didn't like somebody, that was it. And you know, and

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even as she got like, more cognitively impaired, her temper still flared.

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Yeah, yeah.

00:19:46.480 --> 00:20:46.059
Well, that's an interesting question, because it wasn't until probably the last eight or nine months of her life that the anger the outbursts sort of subsided she was. Much more accepting of things. She was definitely weaker. Her voice was weaker. Sometimes you couldn't even hear from, you know, across the table. She just became a little bit more chill about everything. And I remember saying to my wife that I noticed it, and I said, you know, I never really loved dealing with her when she was being really judgmental and angry and proud of the fact that she, you know, rip some, some worker, you know, new one, you know, you know, she tell, would tell me probably I'm like that poor person, you know, I feel so bad for her, but I said to my wife, you know, I kind of miss her feistiness, you know, because that meant that she had energy, and that was her,

00:20:46.480 --> 00:20:51.279
and that, yes, that was her, that was her baseline personality that you probably always feared a little bit.

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Are you kidding?

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I was PTSD from it, but, oh, sorry, I never, never anticipated missing that, missing that. Wow, yeah. So anyway, she would say, I'm not the person I was. Oh, so she was aware, yeah, and so it wasn't like the people who don't remember that they're cognitively declining. She knew and she would like have a memory that she couldn't get, or a word that she couldn't get, whether it was in English or Turkish, and it would frustrate her, but she she said that phrase several times, and I thought that that was really so insightful on her part, and so sad, so sad, because in some ways, maybe it's better not to know. I mean not.

00:21:41.378 --> 00:21:58.358
It's not better for the people caring for you, but it's but she was well aware of it, and she tried to stave it off as much as possible, because they would have these brain flexing classical activities, activities, yeah, to, you know, to keep and and, you know, it would be capitals of countries.

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What state shape is this? That kind of stuff, all kinds of things, movies, and she would proudly show me how she did, bet, you know, did really well and better than anybody else in the smart she was, yeah, he was still, she still had it, man, she could do that. And, but she, you know, she she was so she's competitive that way. I mean, you have to be to get to where she was. And she, you know, she would show me these her tests and her exercises, and then she said, retake them. You take them home to the kids and show them how you know how hard I'm working. I was like, oh, yeah, sure, if you know. And I was quite proud of her for that. But she knew, she knew that she had to keep her mind as strong as possible. She had to do whatever she could to, you know, fend off the inevitable. And, you know, so in that way, she was very proactive about it. I mean, she read books up until she really couldn't focus on them anymore.

00:22:56.739 --> 00:23:29.118
And, you know, carry the plot or whatever. And she always used to like watching TV and the news especially. One of the great things is it made a lot easier on us as we both shared the same opinions about politics. So I avoided that kind of, like generational, you know, conflict. So we that was always a common ground. We could it when she would get she would read the newspaper so she knew what was going on, but she stopped watching TV because she just didn't enjoy it anymore. Do you think she couldn't track it?

00:23:25.278 --> 00:23:47.019
And I think so. So she knew how to turn it on and stuff, but she just chose not to. And I, you know, I would turn it on for her, and she just wouldn't watch it, you know? And that was, that was an interest that was unexpected, because she always watched TV. She was always really up on the news. But, you know, like I was saying, you asked me, would she get frustrated when we were having conversations or some topics that were off limits, whatever?

00:23:47.439 --> 00:24:44.439
Well, when we would sort of broach something like that, and I could see that she was getting a little anxious or frustrated, I would turn to politics, which is what a lot of people probably turn away from. Yeah, right, right. Yeah, that was so we would have the same people to like, you know, we would both be on the same side. So that was really, that was a big plus. So yes, saying I'm not the person I was was very key to me, also recognizing where she was coming from. And eventually, this is soon after the the meds incident. Well, I realized I had several meetings and phone calls with the head of nursing and the head of the head of the facility, it's like, why can't you give her more care? It seems like you're just coming up short. And basically they said she needs memory care, and we are not a memory care facility.

00:24:40.778 --> 00:25:02.519
Got it, and that was another big step, because to wrap my head around, okay, all right, she's at some place that in a cognition, that she cannot stay in this facility anymore, and I have to go find another one. And she had been there at that point for a. Us five or six years. So you

00:25:02.940 --> 00:25:06.420
probably imagine that that would be where she would stay till she died.

00:25:06.419 --> 00:25:14.398
That's what she always said. She said, I'm not leaving here alive. And she did.

00:25:08.759 --> 00:26:33.318
She had a bout of something, I think it was like rheumatoid arthritis. And she she was, she was in pretty bad shape from from these random things just built up. It wasn't just not being able to walk. And so she went into rehab at a place that was not too it was also in Santa Monica, so it wasn't too far, and she was there for two and a half months. Oh my. And fortunately, Medicare and her insurance took care of a good portion of it, but it was a nursing facility and a skilled nursing facility, so that's what she needed. I mean, she needed that much care, and she had been there before, just as for short term stints, and like rehabbing her arthritis, regular arthritis, but this was more more of a major thing. And so while she was there, I found a new facility for her, you know, Belmont village in Westwood. And I think you guys had really good things to say about it. And, and the dementia clinic also said, you know, recommended. And I looked at a bunch of places, and I wanted someplace that was reasonably close to me, and they were full on, you know, they had a whole memory care thing. And so while she was in rehab, I basically got movers, and we just moved her stuff. And so she just never went back to were you nervous about that decision?

00:26:33.318 --> 00:26:39.318
Yeah, yeah. Because, you know, she kept saying, When am I going to go back? When am I going to back from the rehab facility?

00:26:39.618 --> 00:27:18.298
And I kind of had to not say anything, you know, because I didn't know exactly where she was going. And then when I finally did, I just kind of broke the news, and she couldn't wrap her head around it. And did you tell her this was her new home? Were you honest or did you say when? When I when? Yeah, I told temporary until, no, no, I I told her that this was her new place. You're gonna get lot better care here. And Fred, it was nicer and newer. And, I mean, there's nothing to complain about, you know, the facility in terms of their physical characteristics, but it was really, I was concerned about how she was going to take it, because it's a big change.

00:27:18.598 --> 00:27:32.118
It's a big change for for a younger person to move Absolutely, yeah. And so she, um, I moved her. And the first week was, man, I think I got a few calls from her that night, you know, like, where am I?

00:27:28.759 --> 00:28:08.578
What, you know, am I going to be here for a long time? She was disoriented, yeah. And, you know, we had her, we put, we put stuff up. So everything was, like, it was, she just moved right in and her stuff, pictures around, pictures, you know, she had, it was like the girls always laughed, because it was like, it was like a shrine to them, you know, the photos of them, those were all out, you know. So she would feel as much comfort as possible. But it was still so disorienting, because it was like, there's new routines, there's new caregivers, all that sort of thing. And there's a new dining hall and bathrooms in a different place, room place. You know, she can't look she's not looking at the ocean anymore.

00:28:06.538 --> 00:28:12.419
She's looking on Wilshire Boulevard. You know, where am I?

00:28:08.578 --> 00:28:45.638
You know, what part of town is this? So I would have, I would write things like, you are in Westwood, and put, like, a note cards around. Do you think that helped? Yeah, because she would, she was just, I mean, she would see it, and she would knowledge it, and then probably forget about it five minutes later, and then see it again, you know. And so I had all these little notes written for her. And I think it really helped, like when she was at the rehab facility, I had a, I had a bit, just a couple big pieces of paper just said, you are in this rehab facility.

00:28:41.078 --> 00:28:48.278
You're here because, you know, we're trying to get you healthier, that sort of thing.

00:28:48.638 --> 00:29:01.259
And, you know, that's a great idea, honestly. Yeah, it was just like, straight, she could see it straight across on the wall and and, you know, she would look at it, and then she would ask me about it, you know.

00:28:58.058 --> 00:29:46.058
And I would explain, you know, okay, you're here for you're not gonna be here for forever. It's, you know, you need to do this right now, and that's why you're getting this physical therapy and but you need nurses around you all the time. So eventually she she, she was discharged from there, and that's when she went over to Belmont. And, you know, it was, it was a little, she was really uncomfortable for the first week. But then she settled in, she settled in, and she she kind of made the best of it. And by this point, she really wasn't, she was mostly in the wheelchair. And she would do like, you know, a half an hour of physical therapy on the walker for, you know, a couple times a day. You know, I made sure to have physical therapist come as much as possible, and I was always communicating with them another thing, you know, like, what, how did she do? What do you think she needs, that sort

00:29:46.059 --> 00:29:49.599
of thing. So she was declining. It sounds like, yeah, yeah.

00:29:49.720 --> 00:30:22.400
I mean, she was basically in a wheelchair, and eventually she could never get, she could not get out of the wheelchair, you know, except, you know, to transfer to the bed or the bathroom or something like that. Yeah, and that, you know, that was hard to see, you know? I mean, it's a slow thing, but you could see it, and it's sad, it's different when it's the mind, right? Because you can't see it, you know, she'll say something that's really off, that, okay, that's not what we were talking about, you know, does it makes sense, yeah, yeah.

00:30:22.579 --> 00:31:16.079
And my daughters would, you know, they would see her less frequently than me, but so they would see her once a week. And they could, they could, sort of, I mean, they were young, they were still in high school, and they could seek, sort of chart her decline themselves. And you know, we would be there for a couple hours, maybe bring her lunch, and have lunch, and have just talk about this and that, and, you know, they would just talk about their lives at school and, you know, and their activities they were doing. And she just loved that. And always like grinning ear to ear when she was with them. It was, it was wonderful. And they got to get to know their Nana, you know, they they really did, because she really gave them nothing but love, even though she couldn't physically or full on mentally, be there. She, you know, they were, you know, they could do no wrong, right? Very sweet, very sweet. And when we would, we would shut the door as we're walking down the hall, and one of the girls would be like, hey, Nana was pretty good today.

00:31:16.259 --> 00:33:28.940
They would recognize it. Or there was not a seemed kind of tired today. She, you know, or she was, she was, she was more off than usual, you know, they knew your girls are astute, yeah, kids pick up stuff, you know, and and I didn't have to tell them very much. I would tell them the big things every once in a while, you know, but they picked up on it, and they were, they were a source of sort of emotional support for me, and it was, it was great to be able to go to see her with them, because I didn't have to carry the ball, right? Yeah, like I normally would, you know they would so did she always know them? Yeah, she always recognized them. She never did not recognize them or me, which was great, but I, what I was going to say is something I would invite, piece of advice that somebody, an expert, a psychologist on twins, said in a lecture, as it just goes back 18 years, right? And we were expecting, and we knew we were going to have twins, and we were, like, panicking, you know, and, and she this, this woman who was a psychologist and was a twin herself, one of the things she said was, get as much help as you can afford. It will be money well spent. And so we did, you know, we skimped, and we did what we could, I mean, and I found that that held for for my mom, yeah, because, you know, not everybody can afford that kind of care, but it really helps for them to be able to have a professional taking care of them, somebody who recognizes stuff that you won't necessarily recognize if something, If something is good or bad that's happening, you know, and it's also, of course, very good as our in our support group, people say, you know, take care of yourself, because you to have those hours away from thinking about that. Like I said, it's overwhelming to be able to just take some time to yourself and, you know, like, make yourself a meal, take yourself out to eat or just sleep. You know, whatever it is is so important, you know,

00:33:28.940 --> 00:33:40.039
to know that your mom's being taken care of, yeah, yeah, to trust that she's okay, she's okay, so I can stay home and whatever, have a nice dinner with my wife and my kids.

00:33:40.039 --> 00:34:03.299
Yeah. And, you know, that's what we did, and, and, and it was, it's striking, because there are so many similarities to dealing with a person with dementia and like a toddler, you know, there's you converse in a different way, in a simpler way. With a toddler, you basically assume that they don't know anything. So, you know, you know, don't put your hand on the stove, you know, the odd stone, that kind of thing.

00:34:04.200 --> 00:34:16.559
And it's the case same kind of thing with with a person with dementia, I mean, but it's hard, because, you know, this is not this person. Is not the same person that I've known for 50 plus years, right? And that's a

00:34:16.559 --> 00:34:24.019
physician. I mean, this is a highly educated, really smart woman, and now look at her. I mean,

00:34:24.079 --> 00:35:25.219
yeah, you know, I, I didn't think of it that way, but I went back to her facility in Santa Monica. I was moving, moving her out, you know, while she was still in the rehab center and she was, she got along. There were so certain people, you know, how it is certain people in the staff who she bonded with, and one of them was the front desk lady, lovely woman. And she said she asked about my mom, you know, because I was a regular there. So she said, Well, you haven't seen your mom for what? How she doing? I explained it, and I said that she has to go to a memory care facility. Me, and she burst into tears. Oh, and she goes, Oh, it's so sad. Her beautiful mind, all that education, all that all that knowledge she has, you know, she's losing it. And I was like, Oh my gosh, yeah, yeah. And I didn't, it took her saying it to really, like, bring it into relief for me, because, you know, like, I say it's gradual, you know, notice it, right?

00:35:25.219 --> 00:35:41.800
Notice it. And you kind of accept every little step until some, you know, there's a big drop or something, you know, and that was a, that was a really striking moment, and that's, yeah, and that's true to your point. That's really, really true.

00:35:42.400 --> 00:35:49.000
Oh, goodness. So then I guess your mom, I, what I remember in group is your mom took a big fall. Was

00:35:49.059 --> 00:36:04.019
it? Yeah, she was, she had kind of got to this point in 2023, oh, you know, for about seven or eight months, she kind of plateaued, you know, she wasn't really getting worse.

00:36:04.619 --> 00:36:33.440
Cognitively, she wasn't getting better. But and physically, we had, we had a routine. She was in the wheelchair. That's what she was going to do. She did whatever physical therapy she could handle, but she wasn't a walk anymore, and she kind of like she was getting weaker, like I said, she her voice was getting fainter, but she was steady. On August 26 of 2023 I get this call from the facility that she had fallen,

00:36:35.000 --> 00:36:37.639
the dread Yeah, the dramatic call,

00:36:37.699 --> 00:36:51.760
yeah. Now she had fallen, like four or five years before that, and actually broken part of her pelvis. And I thought that was going to be the thing, you know, now, she got through that fine. She got there. She got that through that fine. So it's what we all fear, you know, with the old folks.

00:36:52.119 --> 00:37:57.099
And so she had fallen she was with her favorite caregiver. It was the morning they were getting her out of bed to go to breakfast or something, and she would hold on to the Walker, and then kind of scooch over, because she could kind of shuffle if she was holding on to something, and then sit down in the wheelchair with this her caregiver's assistant. And somehow she fell over the front of the walker, which is not what you normally would do. You would normally fall backwards, and she fell forward and did not let go of the walker, and so she took the full force of her body on her arms and broke bones in each of her upper arms. And she I went to see her in the emergency room, and they explained to me what happened. It was a compound fracture, so there was a really great risk of infection. That's what they were really worried about, because the bone had broken through the skin, and they were going to have to perform surgery that day to set the bones, and she would be in two casts, one on each side.

00:37:53.019 --> 00:38:55.239
Yeah. Up till that point, the only ADL that she could do was feeding herself, and so now that we couldn't do that, out of the question, yeah, she couldn't do that. And that I felt so, I mean, on, on, on so many levels, I felt bad. But that was like, Oh no, now she can't even do that. And you know, you, I think you lose a little sense of purpose or confidence in yourself that the as the things you can't, you really can't do anymore. And that was the last thing. So she was in the hospital for, I don't know, about at least a week, and then they discharged her directly back into the same rehab facility where she wound up spending another two to three months, and she had a hard time with anesthesia. She never she was foggy for a couple of weeks, which is pretty typical, especially in seniors. And there were complications with with the wounds and that, you know, look, if a 40 year old breaks both of their arms, that's really hard.

00:38:55.539 --> 00:39:47.380
Absolutely, here she is, you know, 89 or whatever. She was, 90 and and and 90 years old, and she's having to do that. And I was like, and I was, I really was, day by day, you know, I'll do what we can. We'll do what we can to keep her going, make her as comfortable as possible. But after a couple months there, I spoke to the doctor. He recommended hospice, you know, she said, at some point we're going to discharge her because she doesn't need to stay here forever, but when she gets back to her apartment, she should be in hospice. Okay, I didn't know what that meant. So you know, really what, really what that meant. So there I am trying to learn about what that is. And you know, okay, this is really for maybe the end isn't closer than you know, you you and you thought and you thought, and there was, there's just basically, it's palliative care.

00:39:47.800 --> 00:39:56.559
At that point, you know, you're not. There's no rehab. You're not. There's no rehab. You don't want her. You won't want her working at anything, you know, doing anything that's difficult.

00:39:56.559 --> 00:40:00.599
You want to just be comfortable.

00:39:56.559 --> 00:40:56.500
And eventually she got. Casts off, and I let's see. So she was discharged in December, and she was in we had a great hospice nurse. She was, I loved her. She was, she was so good and so upbeat and really smart and very direct. Yeah, that's what you that's what I like. That's what you want. Yeah, and so, and then my mom got back to her place at Belmont, and I think she lasted six weeks to five months to the day that she fell, she died. She died, yeah, wow. I saw her that day, and it was like, okay, she doesn't look good. She looks like she really is struggling to breathe. She struck, you know, and didn't know. Just she had no clue of who anybody was, and she wasn't aware of anything, and and then she died that night. So I wasn't really surprised at that. I'd already talked to the nurse, and the nurse like, I don't know she could be transitioning any more minute.

00:40:53.500 --> 00:40:56.500
Now, that's what they call it.

00:40:56.980 --> 00:41:00.599
And so they told you, and did the girls get to see her,

00:41:00.900 --> 00:41:12.000
no, and frankly, I didn't. I'm kind of glad that they didn't see her then, because she was really struggling. I mean, she was awake, but she was really and she would not have recognized them, and

00:41:12.480 --> 00:41:16.440
you didn't want their last image of their right grandmother to be Yeah,

00:41:16.559 --> 00:41:42.579
it's burned into my mind. You know, that's okay, but I don't want, I'm glad that they didn't see that we were actually planning on coming the next day, but you know, that never came. So the weird thing was not at first, but after a while, the thing I didn't expect was to feel relief, relief for her, because she was no longer in pain, because she was in so much pain from the last years of her life, but also

00:41:43.239 --> 00:41:46.900
pain from the arthritis, yeah, and then pain from the broken arm, yeah, yeah.

00:41:45.400 --> 00:41:46.900
I

00:41:46.960 --> 00:42:31.579
mean, she already had arthritis pain, then to have the pain from the broken arms was just like, oh, the universe is just like, mocking her and but to be honest, I felt relief for myself, because I don't have to worry about her and spend I suddenly had a lot more free time, and then I felt guilty about that, yeah? Because how could you do that? And I remember talking mentioning it in group, and people who had lost their loved ones were like, oh, yeah, we all feel that, and it's just exactly what you were talking about. Yeah, it's natural. You doesn't mean you didn't love her, but you really are not. You know, you don't have to worry about her well being anymore. That's a that's a big difference, and it was, it's just a habit. It was my job,

00:42:32.900 --> 00:42:40.960
along with your job of Yeah, your real, your Yeah, your profession, yeah, being a dad, a husband, all of it,

00:42:41.079 --> 00:42:48.820
yeah. I mean, I had kids in high school and a mother who was, you know, really old and not in good shape and dying, so it was a

00:42:48.820 --> 00:42:57.579
lot. And I remember you were like, schlepping a good hour across town or more to get home. Yeah, yeah,

00:42:57.820 --> 00:43:38.360
I would do group in the car, either stuck in traffic on the 10 or or just part part of the parking lot, because it was just, there was enough hours in the day, you know? Yeah, and that's something that I think, that I would like to impart on people, that it's okay to feel that the and that is really not expected. The reason if you feel guilty is because you're already caregiving, you care enough to give and you're that kind of a good person. So everybody who is caregiving, that's gonna happen, you might be susceptible feeling guilt because you wanna do as much as you possibly can, but the fact of the matter is, you are doing the best you can.

00:43:38.360 --> 00:43:48.639
You're trying as hard as you can. And the fact that people go to group, the fact that they're listening to this podcast, you know, that means they're trying.

00:43:44.619 --> 00:44:04.800
And guilt is a big thing, because you always feel guilty that you're not doing enough, or after she's gone, I didn't do enough. I should have done this one thing. I should have been there right when she died, and, you know, she wouldn't have known I was there, and I was there that day, so it's like, what could I have done? You know,

00:44:05.400 --> 00:44:15.900
you did everything, yeah, knowing you, you did everything. You pretty much had the whole task of caregiving on your shoulders.

00:44:11.880 --> 00:44:15.900
Really, it was, it was you,

00:44:15.960 --> 00:45:01.800
yeah, it was and, like I said, we were lucky to have help and have a be able to get in a facility. But I want people to know that you're not alone in your experience of caregiving. You may think it is because it's so all consuming, but what I've learned from group is it's great to be able to talk about something that's very specific and realize that there are a lot of people who've had that similar experience to the point where they can give you very specific advice about practical things, about emotional support, all of that, and you do not have to feel like you're the only person in this situation. And so if you need to get yourself into a group or talk to somebody, just. Talk to somebody who understands

00:45:02.219 --> 00:45:16.980
that is a really good point. Is so many people are hesitant about coming into a support group, and they do feel so alone. And just when you go to a support group, oftentimes there is someone who tells your story and you can't believe it.

00:45:16.980 --> 00:45:19.380
I don't know if that happened to you when you came to

00:45:19.380 --> 00:45:37.099
group, yeah, yeah, a couple. There's a couple of women who have very similar mother situations, and so it's like we have the same mother, but that takes that makes you feel like you're part of a community and you're not alone.

00:45:37.579 --> 00:46:13.860
And the way I got into group was I was had this all on my shoulders, and when I was talking, I was I would download to my wife, and she's, you know, been in therapy for many years, and she's big supporter of therapy and talking. And she said to me, after months of this, she said, You know, I don't mind listening to you, but I think you need to talk to somebody. And then that's when I called up, got a hold of the metric program, and said, Hey, are there any like caregiver groups or support groups? And that's how they came to you. And Monica,

00:46:14.219 --> 00:46:33.500
yeah, so it was your wife saying you need someone else to share this with, yeah. And it's so affirming when you get into a group and you hear people talking, it's, right, it's when you hear people say, Oh my God, my husband asked me the same thing 10 times, you know, right? He drove me crazy.

00:46:33.500 --> 00:46:54.639
I mean, just these things that happen in dementia, and it's so comforting, like, oh my gosh, that's exactly how I feel. Yeah, yeah, yeah. I don't know what it was for you that you were like, or maybe you heard about other mothers who were, you know, had a temper, and you're like, my god, that's my mother.

00:46:54.940 --> 00:47:17.219
Yeah. I mean, you know, we used to have this one woman in group who it was like her descriptions of what her mother would say was so similar to what my mom would say or react. And it was like, I mean, sometimes we would just like, be offline, chatting to each other, you know, during group, like, oh my god, who's your mom? Are you free? Not mine?

00:47:18.900 --> 00:47:23.179
Are we long lost sisters? Yeah, right, a brother or siblings are Elon Musk siblings? Yeah,

00:47:24.380 --> 00:47:46.780
you'd be sitting there like the recognition was, you know, and it makes you feel better. Weirdly, you feel better because it's like, okay, I'm not the only one. I'm not crazy. I don't not the only person going through this. Yeah, that's exactly right. And seriously, getting people into a group or just talking to people, you know, I think that's so essential.

00:47:47.619 --> 00:48:13.619
Absolutely no, I absolutely agree, Steve, you're an amazing son. You have real No, it's true. I mean, you here in our group, everyone says that. So you did so much for your mom, and the fact that she was out here and your girls had such a nice relationship with her, so wonderful, such a source of, you know, just such joy for your mom and for you to see the relationship that they had, really wonderful.

00:48:13.679 --> 00:48:25.039
Yeah, I never anticipated her just moving here, you know, and but she wanted to be with her grandkids so much, I think, more than being with me, but she had enough of me.

00:48:27.320 --> 00:48:45.579
I'm sure she wanted to be with you too, but, oh gosh, well, I thank you for coming and spending this time with me. I so appreciate. I feel like I've gotten to know your mom and and you even more. And it's just, it's delightful. So you're delightful. Thank you.

00:48:42.099 --> 00:48:45.579
Thank you for coming on. I

00:48:45.579 --> 00:48:59.440
hope that I could have helped some people out with some of the things I experienced and some advice. And nice thing about this is it made me really think about my mom as intensely and deeply as it's been in a long time. So thank you for giving me that opportunity.

00:48:59.739 --> 00:49:02.159
Absolutely You're welcome. Thank you.

00:49:07.500 --> 00:49:41.260
Thank you for joining us today on another episode of dementia discussions. 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 310-362-8023. 628232, 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.

00:49:41.320 --> 00:49:45.280
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