March 10, 2026

Letting Go of the Plan: Accepting Memory Care for a Parent

Show Notes
Transcript

In this episode of Dementia Discussions, I’m joined by Jefferson, a member of one of my caregiver support groups, who shares the powerful story of caring for his mother as she navigates dementia. Once a vibrant entrepreneur and theater producer, his mom was always the person bringing people together—making the changes in her memory and behavior especially difficult to witness.

Jefferson opens up about recognizing the early signs of cognitive decline, navigating a diagnosis, and facing one of the hardest realities caregivers encounter: realizing that bringing a loved one home isn’t always the safest option. We also talk about advocacy, memory care, and how finding the right environment ultimately brought peace of mind for both Jefferson and his mom. If you’ve ever questioned whether you’re making the right decisions as a caregiver, this conversation will resonate deeply.

Episode Highlights

[0:00] – Jefferson reflects on the moment he realized bringing his mom back home wasn’t a safe plan.

[1:07] – I welcome listeners back to Dementia Discussions and invite caregivers to share their stories.

[2:00] – Jefferson joins the show and shares the vibrant story of his mother’s life in theater, entrepreneurship, and community building.

[4:48] – The first subtle signs of memory changes begin to appear—and a powerful moment during one of Jefferson’s presentations raises concern.

[7:59] – After Jefferson’s father passes away, his mother’s cognitive decline accelerates while living alone.

[9:45] – Jefferson describes the growing caregiving responsibilities, including managing finances and noticing changes in behavior and mood.

[13:05] – Resistance to in-home help and the challenge many families face when trying to introduce outside care.

[14:14] – Seeking a formal diagnosis through his mother’s primary care physician and preparing for future care needs.

[18:10] – A frightening health crisis leads Jefferson to rush to Palm Desert and call emergency services.

[20:09] – Transitioning from hospital care to assisted living—and learning the limitations of what assisted living can provide.

[22:30] – Jefferson’s plan to temporarily move his mother back home in order to manage mounting care costs.

[25:10] – Within minutes of bringing her home, Jefferson realizes the situation is not safe and that professional care is necessary.

[27:22] – I share how many caregivers experience the same hope of bringing a loved one home—and why it often doesn’t work.

[28:22] – Jefferson goes into full advocate mode at the hospital, pushing for a new discharge plan and appropriate care.

[32:12] – The turning point: hospice and palliative support open the door to a new memory care placement.

[34:45] – Jefferson describes the smaller memory care community where his mom now lives safely and happily.

[36:56] – Weekly updates from staff and the relief of knowing his mother is well cared for.

[38:07] – Understanding hospice and palliative services as supportive care—not only end-of-life care.

[41:10] – Visiting his mom regularly and navigating the emotional reality that she’s still there—but not the same.

[42:19] – The importance of caregiver support groups, friends, and family during the caregiving journey.

Caregiving can feel incredibly isolating, but conversations like this remind us that none of us are alone in the journey.

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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You know, I'm a pragmatist, and I was also being very optimistic. I'm going to bring my mom back to her house.

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I'm going to reset it up. I'll be here with her, and we'll do it for like, six months. And so I was like, You know what? I can do it. It'll be fine. She was excited about it, so we brought her back to her house that one night, and within basically, like the first 15 minutes, just it was clear that it was not a safe situation. It was clear that I was being way too optimistic, both my husband and I, that we were in any way, shape or form, qualified or capable to give her the care, you know, and the safety that she needed. I mean, it literally took me about 30 minutes from my big grand plans to bring her back home that I was like, There's no way. It's not safe, and I need her to be safe. Yeah, I was in trauma. I really was.

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But within the 30 minutes, I'm like, there's just no way. It was very frankly, honestly, like, it was traumatic. And I was talking to my sister that night, and I'm like, I am just like, I am freaking out. And so it was rough. It was rough.

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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 am 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 Jeff. Hello and welcome to dementia discussions, the podcast for and about caregivers today on the show. I'm so thrilled to have Jefferson.

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Jefferson is in one of my caregiver support groups, and he is recently in the group. So welcome to our group. I know you haven't been there a whole lot, but I quickly asked you to be on the podcast, because I think your story is relatable, and so I'm so thrilled to have you here. Thanks for coming on.

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Thank you so much for having me absolutely so I know that your caregiving journey is about your mom, so I don't know your mom.

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I've actually never met you in person either. So tell us a little bit about your mom.

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Yeah, I'd love to.

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Well, thanks for having me, and I hope that anything I can share is helpful to the folks that take part and enjoy your your your podcast. So my mom is we're from my mom is actually she's lives in Palm Springs. I grew up in the Bay Area, Northern California. My mom is originally from England, but a naturalized American citizen. About 30 years ago, she has had a great career.

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She was in the theater. She was in the entertainment industry in the Bay Area. She became a pretty well known community producer. So she did a lot of plays and musicals in Marin County, Sonoma County in San Francisco for about 20 years.

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She was also an entrepreneur.

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She owned, she had a store in Sausalito up in Marin County, and then she also had a foods business. She made a bunch of different products, lemon curds and jams that were sold in Williams Sonoma around the country. So she was a very dynamic entrepreneur, a very social, networked, connected person. Very much the the community connection in my family was always through my mom, very outgoing, very spirited still is, you know, very connected and very engaged.

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So I think I got a lot of my interest in, you know, entrepreneurship and production and creation from my mom and my dad, at any rate. So she, really, she always was, just very dynamic, very engaged, you know, fun, funny, definitely a performer and a love to bring people together and create experiences for folks so and she's still that way. She's still very social, but we'll talk a little bit more about how things have evolved in her life.

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Wow.

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What a colorful person. Great description. We clearly can get a vision of your mom, yeah. And so it sounds like somewhere along the way, you started to notice trouble with her memory. When was that?

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Yeah, yeah. So my parents retired from Northern California down to the desert, down to Palm Desert, about probably 22 years ago. So my mom just turned 91 so they came down here. Or when she was in her when she was in her early 70s, my dad was a few years older. I think I really first noticed that something was not the way it used to be in terms of just her memory and her processing of information. Probably about was probably about 10 years ago.

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Maybe, yeah, about 10 years ago.

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And I mean, it started out with little things like, you know, asking similar the same question over it started with little things like, you know, not knowing where things were, and constantly asking the same question about the same thing, and then finding it in a completely different place that she had put it in, which I think these are somewhat common experiences. And then I think for me, there was also one really, there was kind of an aha moment, a light bulb moment, not necessarily in a good way, but I did a lot of work in higher education, and I was in the desert for work at an event, and I invited my parents to come to the event. I was presenting at the event. And I mentioned this only because, you know, my parents have always been, like, very engaged and very present and really excited if they could be a part of, you know, seeing me do what I did professionally.

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And I remember very clearly I was thinking about it earlier today that I was, you know, in the midst of doing that, you know, presenting and speaking to a group of people, my mom and dad were there. I took a look at my mom really quickly while I was presenting, and there was a bit of a blank look. And I'll never forget that moment, because that was and I just kept going. But I'll never forget it because I were thinking in my head, this is not, that's not what's going on there. And that was really Barbara, I think, the very first time that I really saw physically something was not the way it used to be, and it wasn't because she was tired. It was something else. I didn't know what it was at the time. So I think that was a very kind of pivotal moment for me. Then, frankly, my dad blessed rest his soul. He passed away in 2021 in November of 21 and I it was after he passed away that she was living by herself. I would come out every other week, but that's when things really started to decline. And she had been a little bit fuzzy when he was prior to him passing but it's that's kind of she became a bit unmoored, which is, again, not uncommon. They were married for 57 years when he passed away. So, you know, they were always together. So that was when I that's when things really started to accelerate, partly because she was alone. She was, you know, not engaging with folks. I think that accelerated her cognitive state. She wasn't participating the way that she used to in groups, even just like phone calls, she would still chat with people, but the outgoing characteristics that really defined her for as long as I remember her stopped or rapidly decelerated. So those were, those were some of the real key moments, particularly that moment when I saw her blankness, which I had never seen

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before, yeah, especially after describing her as such an engaged person, yeah?

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Like she would have been beaming to see you up on stage presenting at a conference. Of course.

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Yeah, yeah. So that was why I was, like, a very notable cue for me.

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So did that look like now you're going out to Palm Springs more often. Or do you have siblings?

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Yeah, I do. I have a sibling. My sister, she and my she and I share my dad. So she's, she was born from my dad's first marriage, so she's not genetically connected to my mom, but has known my mom, of course, her whole life. My mom, you know, their whole lives. So, yeah, but it's really me. I'm the only child at my parents, so it's really kind of me that's here to, you know, care, and also my mom, as I mentioned, from England, almost all of her family is still in England. She does have a sister up in Oregon, although it's hard for her sister to travel down, because she's also got some health issues, not cognitive, but just more mobility issues. So, yeah, it's been really just me. And so, you know, I was coming down when we were in the pandemic, you know, and then after the pandemic, because I was working remotely, I was able to come and visit my parents a lot, which was great when my dad was still living so I would, I had a regular, you know, cadence with them. And then, like I said, after my dad passed away, it became kind of an every other week thing, just because I wanted to be there, of course, with my mom and for my mom. And then increasingly became clear that needed to be it was necessary to be present.

00:09:37.580 --> 00:09:41.259
So where did were you starting to go down every week.

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I was going down every other week. I was going every other week. Yes, were

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you pulling and were you, like, starting to pull in help, or what?

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No, no, I'll tell you. It was like probably the for the first year after my dad passed. She was just again, a little bit, you know. Know, unmoored, but still able to, you know, cook and maintain the house. There was never any like, I never came home to see like, what has happened to this house, like she maintained everything, and to this day she still does.

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But as kind of we went into months 14, 1516, after my dad passed away, that's when you know, I would come home and you know, I would do, I would do all the accounting, because I'm the executor for my parents. And so I would, you know, go through the accounting each month as just one example. And you know, as I would go through and you know, I'd organize it all for her and have her sign it, we would go through the same conversation every single time about, like, what is this? Why are there? You know, what is this bill that you've been paying every month for 20 years, like, why am I paying? And so we would go through this whole and I'll kind of talk about this in terms of some advice and insight that I gained in the process.

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But we would go through kind of the same rigmarole every single time, and there was clearly not a clear understanding of what we were doing, which there always had been. She was a business owner that when we got into kind of a year and a half after my dad passed away, Barbara, is when I started realizing we're going to need to get some support. I wasn't, I didn't have a diagnosis, but I knew that something wasn't totally right, you know. And there were ups and downs, and it became a little bit more, you know, just there were moments of some, you know, behavior swings that I hadn't seen before, which were challenging,

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but what were comfortable talking about them

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there, yeah, it was just that. There was there was there were just, let me say it this way. There were more ups and downs. There was a little bit more volatility than I had ever seen that I had, ever had, you know, energy with my mom before, mood wise,

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like she used to be very even keeled, and then, yeah, yeah, suddenly, was she more angry or more

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it was, there was yeah, there was a little bit of both. I think there was a little bit of both. There wasn't Yeah, there was a little bit of both in what I observed. And so, you know, that was difficult to see, but I also knew that it because, it was because she wasn't there was clearly something that wasn't right,

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and was she coming at you, like you're, you're taking over. You know,

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that happens sometimes. Yeah, that happened.

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That did happen sometimes. But then, you know, she would also then say, I really am grateful.

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I she would have, she come back to a presence of mind, you know, I'm grateful. Thank you, you know. But then it would go, you know, it would go limbic. And so that would, that would be a challenge, that would be a challenge. And also there was, you know, that's when I was like, You know what? Maybe it would be helpful to have someone come in and, you know, come in a few hours, three times a week, two times a week, even, like, make some food, clean the kitchen. You know, clean the house for you, that's all. But I had a really hard time. I did not get alignment or acceptance of that, which, in speaking to many of my friends that I grew up with, who I'm very close with, still, that was also their experience. I've heard that, and I heard that in the group that I've been in with you and everyone similar experiences, yeah.

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So she did not take kindly to that idea.

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No, no. And I mean, even when my dad was still, when our dad was still living, you know, I did a few. I had a few occasions he didn't. It was just because they were getting older.

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He was 90. She was in her late 80s at the time. And so I just felt like, Hey, let me just get someone to come in and help you with some clean some cleaning and some cooking. It wasn't that they weren't eating, it wasn't that the house was a mess. Those things weren't happening, but I was just trying to give them a little bit of help, you know, to lighten the load, a little bit like I didn't want my mom at 88 to have to still be a housewife, you know, cooking and cleaning and all the things, because, you know, that's a lot, and it's a lot, especially as you get older. And I just felt like, Hey, listen, we can do this.

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Let's just get you some help.

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But they just didn't want it.

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They just were really, like, very resistant, which, again, I've heard from a lot of people,

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so it sounds like you're, she's just, it's a year and a half in or so, and you're realizing a little more, and you're realizing, okay, we there. This is more than grieving. This is more than some forgetfulness, like Mom, we need to get so how did you pro like, broach the subject of getting a diagnosis?

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Well, I actually just we have, she has a very good primary care provider in Coachella Valley, someone that she really liked. And so we would go, you know, I would take her regularly. She had been going, actually, it was a new doctor. So after my dad passed away, yeah, she didn't really like the doctor that she had been with. And so I was like, All right, let's find a new doctor. We found a great one. So we started going regularly. This did happen, all of it after my dad passed, so again, about a year and a half in to after he passed away, and into this new primary care physician. We just went in for one of her appointments. But in advance, I asked them. I just asked the the doctor, I wanted them to do a an analysis and let me know what was going on. So I can't remember precisely. I think.

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It's the California is it the California 602, form? There's a form that

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is used to go

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into that facility that's for assisted living. So I did, I actually had them do that, you know, give me a sense, is there a diet? What's going on here? So that was probably summer of 23 about a year and a half after my dad passed. So that's when we got the diagnosis. So to be honest, like it was at that point processing like me saying, Hey Mom, we're gonna get this diagnosis. We didn't even do that. We just it was her regular doctor appointment, you know, and as her advocate, as her executor, and as her basically evolving into caregiver, you know, I just had to make the decision that that was something that I needed to ask the doctor to do. And at this point, the doctor was already kind of communicating, of course, with my mom, but when it was an issue, they were looking at me, speaking to me, and engaging with me, which is good. I'm glad for that.

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And was your mom mad about that? No, she didn't really

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process what was being what was happening.

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So she wasn't insulted or No, no, yeah. And so he started asking memory questions. And she was okay. I mean, it sounds like you have a good she has a good primary doctor.

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She does have a good primary doctor. It's a she. And so, yeah, she would ask she and the nurse practitioner, you know, they did. They asked whatever the battery of questions were. I can't remember precisely, but it was following that appointment that they did give me, kind of the the essay, and they did all the blood work and all the other things that they were doing at regular appointment, but in the out output that came from that, you know, that's when they did indicate that there was, you know, that dementia was indeed a diagnosis just Based on processing of information, memory, you know, conversational engagement, and all the cues that they look for as medical professionals. That was when they determined which I thought was the case. But that's when they codified, yeah,

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it's kind of confirmed your hunch, yeah, yeah, yeah.

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And, you know, to be honest, I did do that also with the intent of, you know, I knew that there was going to be a time when we were going to need to move her to assisted living, because I just saw the writing on the wall. So that was also why I wanted to get that done.

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And in fact, I did have, I did provide them with the California 602 form, or whatever the number is, I can't remember, because I wanted to get that all done and buttoned up, just so that when, you know, unfortunately, God forbid, when the time came I would be have what I needed, as opposed to,

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you're prepared, yeah, you're prepared, yeah. And I know there's a good story before you ended up moving her, yeah. And I would love you to talk about that, yeah.

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Well, there's actually, I mean, there's, there are many stories. There's lots of good stories. There are a lot of there are a lot of stories.

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So when, when we connected, when I in one of the initial groups that I joined, I had talked about moving her back home. So basically, after two years at home, and things continued to, you know, not go well, and you know, she wasn't solid and stable, and it was increasingly difficult, and we'd be in touch, but it was increasingly just, you know, it wasn't working. Her living alone and a big house, even though she had neighbors that would watch out, it just wasn't working. So she

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had, do you mean by that? Do you mean like she wasn't taking her medications?

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She wasn't

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taking her medications, she wasn't she was eating, but she wasn't taking her medications. She was eating kind of erratically. She was, you know, she would watch TV until one o'clock every morning, and her hearing was going as well, which I know is a real challenge vis a vis dementia, and that's been, that's a whole nother thing. But so the TV would be really loud, and it would be up until one o'clock, and she's in a retirement community. Her house is in a retirement community, so that became a little disruptive for neighbors. I never got any complaints, but I just felt like I was sensitive to that, you know, with the screen door up into the TV volume up, so was the November of 2024, and there were like two days I could not get in touch with her. And then my neighbors were like, the lights have been off for, you know, they've been off. And so I just, and I couldn't get in touch. The neighbors didn't know what was going on, so I literally, like, I didn't my car was in the shop. I took an Uber from from LA to bomb desert, because I didn't have any other way. So I'm like, something's wrong. So I drove out to the desert, and I found her. She had had, she unfortunately had, and she's fine, but she had a minor stroke, and she also had an infection. And so like, I found her in a, you know, not in a good place. And so we, I immediately called 911 rushed her to the hospital. She's fine, nothing, no negative impacts from the minor stroke. But it was the, it was the kind of culmination of her not taking care of herself and being in a really bad place in terms of her health and wellness. So this is over the holidays in 2024 and then, as a result of all this, like, we had to move her from two weeks in the hospital to a sniff in Palm Desert. And then I was like, All right, well, now this is the this was the horror.

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Event with the silver lining. So the horrible event was finding her. Thank God I got there. And, you know, she was cognizant, but in shock, and I was very upsetting and very scary to see her, but it was okay, you know, I mean, not okay, but it was like we got her and got her to the hospital, good hospital in the desert, and that then resulted, thank God I had done that with her primary care, because then I was able to get her into an assisted living facility. So she was at this assisted living facility for two years, and then, as things kind of continued forward in the assisted living facility, as you might know, they can't force people to take their medications. They can't force residents to bathe. They can't force residents to do anything.

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Which I understand, and that makes sense. I get it, but it was clear that my mom was needing memory care, or that it was imminently needing now she was still present. She would engage. She was a little bit Dotty, but like she was present.

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But the worries were the medications and the bathing and so forth. She would eat regularly. Still has a great appetite. That was a problem, but all the other things were problematic. So that's when I cue to when I met you and joined the group, because I knew that memory care was imminent. I knew that it was going to be just beyond an arm and a leg, and it was really like my dad set, you know, he planned, but at the same time, like, no matter what, you know, unless you are super human you you know, these are massive, massive, massive out of pocket expenses. And gratefully, my dad was a veteran. The Veterans Administration was something I pursued as a benefit for my mom made in attendance.

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So thank God for that. My mom's Reverend here in the desert was someone that recommended that to me. So I got all those things squared away, but it was still a lot of money. So that's when I met you, and I was like, You know what? I'm just gonna bring my mom back to her house for a few months. This is, this is me being, you know, I'm a pragmatist, and I was also being very optimistic. I'm going to bring my mom back to her house.

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I'm going to reset it up. I'll be here with her, and we'll do it for like, six months. And so I was like, You know what? I can do it. It'll be fine. And you know, it's not gonna be easy, it's gonna be really hard, but I'll figure out a way. I've got my work set up here, you know, I've got a situation. I'll bring in a caregiver that will be able to be here. We'll have, like, four days a week someone here so that I'm relieved. And so fast forward to then that was the plan. Fast forward to I had said we're gonna leave your assisted living on this day, and I'm gonna move you back home with me for a few months. It's gonna be great. She was excited about it,

00:22:30.679 --> 00:22:33.858
and you're gonna move your whole I mean, basically my whole

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life, which is hard, and my husband and I live in LA obviously, together, and that was gonna be a sacrifice, but we knew that we had to do what we had to do because the I needed to the strategy was, the rationale was, Barbara, as I think I shared with you in the group, I just, I knew that I was going to need to amass capital before, like, if I had a window of time that I could just, like, save the money, because I knew that I was going into a Memory Care situation, which was going to be massively expensive. So cut to the day that I'm supposed to pick her up. And just like the fourth quarter of 2024, when I arrived at her space, I found her on the floor. And again, it had happened. She had another infection, and she had been they had seen her at 6am that morning. I showed up at 9am between that time she had, you know, she had been not well. And so this, again, is back to like, I'm paying a lot of money for assisted living, and I'm not putting them down, but there are only so many things they can do.

00:23:36.319 --> 00:25:10.259
And so, because she would refuse, she then once again, here we go again. So back to the hospital. This is a long story, but back to the hospital instead of, like, the day I'm supposed to move around, I have to get the the ambulance from her assisted living. So, like, everything is thrown upside down. And I've been spending the past week moving and painting and reorganizing and putting up, you know, safety bars. And, you know, my husband and I doing all, I mean, it was crazy. And this is all in December of 2025, like, this is all happening once again, right before it was December 20 what was it the 23rd I mean, it was right before we were gonna have her back here for Christmas. Oh my gosh. And so everything kind of fell apart, to be frank. And I was like, Okay, this is not so she was in the hospital for two days. They it was a bit challenging too, because they were just kind of, they want to move people through. And I, in retrospect, should have not consented to her discharge. I did, because it was all like I was in such a daze myself. So we brought her back to her house that one night, and within basically, like the first 15 minutes, just, I'm not going to go into the details, but a number, nothing, nothing. She wasn't hurt. But like, it was clear that it was not a safe situation. It was clear that I was being way too optimistic, both my husband and I that we were in any way, shape or form, qualified or K. Capable to give her the care, you know, and the safety that she needed. I mean, we would be here 24/7, but, like, it was just clear that was not a tenable situation.

00:25:10.319 --> 00:25:15.480
So she was beyond what you guys could do, like, mobility wise,

00:25:15.480 --> 00:25:25.400
she her mobility, she's still, still to this moment, she's totally ambulatory. So thank you, God, like she is fully ambulatory.

00:25:21.500 --> 00:25:35.900
She has a rollator. She's never needs it. And I have, I'll talk a little bit about where she is now, and kind of the regular updates I get. But I talked to the case manager every week, they're like, Oh no, your mom's moved. And whenever I see her, like, she's mobile, she's fine.

00:25:36.200 --> 00:25:37.039
So was it

00:25:37.099 --> 00:25:39.140
like, bathroom hygiene? Like, what was it?

00:25:39.140 --> 00:25:39.559
Yeah, it

00:25:39.859 --> 00:25:43.299
was bathroom hygiene.

00:25:39.859 --> 00:25:43.299
Yeah, it was bathroom hygiene.

00:25:43.539 --> 00:26:37.099
And it was just basically, it was an interesting thing, because after now two and a half years, you know, of her being in a assisted living facility, which was great, and I knew that she was cared for, even though she couldn't get everything I wanted her to. It was the contrast of like her coming back to the house, being back in the space, and me seeing her now, two and a half years later, after all that she'd been through, and, you know, the evolution of the illness. And it was just like looking at her here in the space, because I'm in her house right now, was like, it was unsettling immediately. And then, you know, there were just, there were a few accidents, and it was, I just real. I'm like, There's no way. I mean, it literally took me about 30 minutes from my big grand plans to bring her back home that I was like, There's no way. It's not safe, and I need her to be safe. I was in trauma.

00:26:37.400 --> 00:27:21.920
Yeah, I was in trauma. I really was, I mean, I was really, I was, I literally, like, you can't see it, and I don't need to show you, but like this where I am now is the den, and the room back there is the bedroom for her. I was literally sleeping on the floor here because I was so freaked out that she was what she did once get up in the middle of the night and, like, hit herself or knock something over. And I just realized, I'm like, This is not I mean, I wanted to create a safe space, but it wasn't. And so I was, again, maybe a little bit optimistic, but within the 30 minutes, I'm like, there's just no way it was very frankly, honestly, like, it was traumatic. And I was talking to my sister that night, and I'm like, I am just like, I am freaking out. And so it was rough. It was rough.

00:27:22.159 --> 00:27:51.098
Now I'm so glad you told this story, because I think we all have this wish, and I know I did too. You know, my partner with my mother in law, we did the same. We moved her into our place, and it didn't work out. And I'm in the business, and it didn't work out, so it's so I can so relate to what you're saying. You know, thinking, you know, just that whole, like, we can do this, we're going to take care of you.

00:27:52.000 --> 00:29:17.759
Yeah, we really, and, I mean, of course, because that's the authentic, sincere desire. But then you realize, really, really, really, really quick, really quickly, yeah, the end of the day, like the thing that matters the most is your spouse, your parent. Like you just want them. You just need them. You just need to know that they're safe and cared for. And so, which brings me to then what happened? Because that was all those things that we just talked about, like it was very, very heavy. And so I just told Vincent, my husband, I said, Listen, we I'm going to take my mom back to the hospital tomorrow morning. I'm going to march right back into that emergency room. I'm going to say the discharge was premature. We do not have a safe care plan for my mother where she is. I need to re I need to I need the discharge to be revised immediately. And for me, this is one of the big, I think, the most important thing that I've learned and that I've when I talk to my friends whose parents have had dementia and gone through these things as well, similar, you just have to be, like, I went to full hardcore Alpha advocate mode, relentless alpha power, because you have to, because if you don't, they'll just roll over you. And I'm sorry to say it, but they will. And so I don't care. Like, I'm a nice, you know, mild mannered person, but when it comes to that stuff, like, get out of the way. And so I didn't care. Like, honestly, I didn't care if I was being I wasn't loud or rude, but like, demanding, forceful and relentless, because otherwise, if you're not, they'll just, like, roll you into the carpet.

00:29:18.299 --> 00:29:40.339
So that was I brought her back and demanded, demanded to see the primary care. They're the attending physician that she was with when they discharged her, and I acknowledge, I said, You know what? I was in such a blur, I should not have complied with the discharge. But this is the situation, again, not a safe care plan, not a safe situation.

00:29:36.259 --> 00:29:59.920
I need a revision to the discharge plan. So I got then, like the attending physician and the healthcare plan advocate and the social worker, and then they brought in and connected me with with providers, hospice providers, not because it's end of life for my mom, but just hospice in terms of long term palliative care. And that made the difference, because that resulted in where we are now, which.

00:30:00.000 --> 00:30:19.500
Talk about, you know, what good for you? Good for you, calling it together for the care and safety of your mom and you your well being, too, like your mental health. Yeah, clearly the situation was untenable, and you totally Yeah, you knew it, and you went into advocate mode. Good for you.

00:30:21.299 --> 00:30:37.880
No, I really like, I will say, like, if there's anything I'm proud of, and from the situation, it's that insight, that learning and doing that for my mom, because you do, you have to, and it's like, and I because I knew it wasn't going to be like, if you just don't, if you don't stand up, it's not going to get done.

00:30:38.299 --> 00:30:40.279
Yeah, and you know what? And good for you.

00:30:40.400 --> 00:30:50.619
That takes a certain amount of humility, right? To say I'm in over my head, like, what was I thinking? Yes, yeah, yeah, yeah.

00:30:50.619 --> 00:30:55.299
That's why, when I came to change your mind, yeah, and it's okay to change your mind, yeah,

00:30:55.720 --> 00:31:05.039
yeah, yeah. Well, and I, you know, it's, I'll just share with anyone who's watching which your groups are great, and I'll talk a little bit about but it's been very, very helpful.

00:31:05.279 --> 00:31:40.720
And I wanted to come back in my last visit to the group, just to show because I had shared, when I met everyone, what I was going to do, and again, all of my kind of hopefulness and, you know, vision. And I could tell people were like, okay, you know, I mean, they were very, very lovely and very supportive and very positive and very real, you know. And I knew all there, like this was a challenge, like, I wasn't saying, Oh, it's gonna be fine, but I also felt that it was important I wanted to let because I had only had that, you know, chance to share what I was going to do, and then everything happened. So it was important to me to kind of come back and share with you all what had happened and then the changes.

00:31:37.279 --> 00:31:59.140
But at any rate, so I think, yeah, you just have to. You gotta, you gotta stand up and you gotta take, you got to acknowledge when you can't. And that literally, like I said earlier, within 30 minutes, maybe even 15, when I brought her back, my mom back home, I was like, There's no way. I want, we wanted to, I wanted to, but there's just no way.

00:31:59.319 --> 00:32:07.440
Yeah, good for you, for acknowledging that, you know, having the ability to really just be honest, right?

00:32:07.440 --> 00:32:11.579
That's a certain honesty with yourself, your partner, yeah, like, yeah,

00:32:12.299 --> 00:32:51.279
in this house. Or if we brought her back to home in LA, it would have, in a way, in LA, it would have been worse, because it would have been, you know, such a she knows the house, but a complete disconnect from everything she's familiar with out here. At least she's got that familiarity of place and space. But at any rate, so the silver lining that came out of all of this was, you know, the day that I took her back to the hospital, we were there all day, like, this is Christmas this is Christmas Eve. Oh my maybe it was, No, I think it was Christmas day like this is, I'm like, please, I never want to have to do this on the holidays again. But I will if that's what happens, but I hope it doesn't.

00:32:47.740 --> 00:33:44.920
So we're like, in the hospital, it's probably Christmas. I think it is Christmas. And it's all a blur still, even here, you know, as we're into 26 but that was when I met these folks from the different hospice providers, and I just feel very my family is incredibly grateful for hospice as a part of Medicare and hospice as a service overall. So we found one provider who was incredibly wonderful, very empathetic. You know, similar story to mine in terms of, you know, age and experience with mom, and, you know, a lot of characteristics that were aligned in our experiences. And so he recommended a great, you know, he I told him what that we needed memory care. I let him know that my what my concerns were, and that I needed to find something, you know, that was going to be at a certain budget level, which I was not certain would be possible, and lo and behold, they found me something.

00:33:45.339 --> 00:34:17.699
And it is fantastic. So we got my mom into this great still in palm in the desert, in Palm Springs, this wonderful facility. It's a much more intimate space where she was with several 100 people. Now, where she is is these little cottages, bungalows that each have about 15 residents, and she's in memory care and just fantastic, intimate, lovely. She has her own space still, and she is, but she's, most importantly, it's totally safe, secure. You know, meals not mandatory.

00:34:17.699 --> 00:34:42.400
Sounds like they're they're not shouting. But like meals, you got to have them, medications, you got to take it, bathing, you got to do it. And so in addition to the facility, to the memory care, 24/7 staff, I have the the hospice services that overlay that three days a week. So like my mom is bathing regularly, eating regularly, she's happy and she's safe.

00:34:44.440 --> 00:34:45.340
That's amazing.

00:34:45.519 --> 00:34:47.260
So I'm incredibly amazing.

00:34:47.260 --> 00:34:51.159
That's an amazing story. So she's not resisting care at all.

00:34:51.219 --> 00:36:06.298
No, no, I get a, I mean, these folks call me every single week with an update, which is fantastic. I can't say that I got that from you know that where I. Was prior, they were great, but I didn't necessarily have that. They should have provided it, but they couldn't. Didn't have the capacity or the bandwidth, whatever different conversation not necessary to go into it here. Yeah, she's, she's she's bathing, she's not resisting medications. She the nurses tell me every time they call me with an update, they're like, your mom is our favorite. We love her. She's so charming and so fun and so nice and so yeah, and she's always been that way. But it was just really good to hear that, because that is how my mom has always been. Like she's very likable. Like everyone we have our moods ups and downs, but like, she's a likable, sociable person. And I think that, to be honest, like there was maybe even that, I don't know this is now just a feeling. I think that maybe in my in her heart, my mom knew she wouldn't want to say but when we brought her home, I think that she probably knew in her gut instinct, not because she knew that I wouldn't take care of her, because she knew that I would, but I think she knew that she needed to be somewhere that was like a facility. And I don't that's a little bit of a non sequitur comment, but at the same time, I think that was a real factor.

00:36:06.298 --> 00:36:11.518
And so the point is, where she is now, like, there's a beautiful garden in the back.

00:36:08.938 --> 00:36:54.818
It's all, of course, you know, you can't, you know, it's, it's a contained facility, but there's space and a little walking path and good food. And they put out little, you know, tablecloths for them every meal like it's very sweet. And there are a few other ladies there that she's become friends with that are about her age. Some of them also worked in entertainment and theater. So they have, you know how engaging their conversations are. Is not really the point, but they're connecting in the way that they can connect now. But again, most importantly, just all the things that I needed bathing, medications, food, activity, participation, safety is all is all there. So I'm incredibly grateful. My family is incredibly grateful. My sister, myself, my husband, my mom's fan, just the whole family.

00:36:54.818 --> 00:36:56.679
We're really, really grateful.

00:36:54.818 --> 00:36:56.679
Really.

00:36:56.679 --> 00:37:16.559
It's a story of, I mean, it sounds like she knew, you knew, she knew that she needed more health, I think so yeah, and like, finding the right fit for what she needed, yeah, yeah, finding the right size of facility. Sounds like they have dementia expertise.

00:37:12.840 --> 00:37:21.199
They do, right? They have experience, yeah? So excellent.

00:37:16.559 --> 00:37:21.199
They know how to approach her.

00:37:21.320 --> 00:37:27.320
In terms of bathing, you know, in terms of taking your medications, they must, like, This must be what they do. That is

00:37:27.500 --> 00:38:07.260
what they do. Oh, yeah, absolutely, they're, this is their they're really, really, really good, you know, and they're empathetic, and they're friendly. And again, I think, to your point, like a smaller community, my husband was reflecting on this after we got my mom settled and was, we're starting to get, you know, the weekly reports, it was very clear that just this more intimate environment is just better for my mom. They're still social, there's still enough people, but smaller and just where she's knows that she's being taken care of and in a professional manner. That really, I think, I think that gives her a sense of ease. I think it does, Oh, absolutely.

00:38:07.260 --> 00:38:16.800
I'm sure it gives you that sense of ease, yeah, that peace of mind. She's being taken care of. She knows she's being taken care of. Yeah?

00:38:13.380 --> 00:38:21.500
She doesn't need to have that edge anymore, right? Yeah? But yeah,

00:38:22.099 --> 00:38:47.079
she's just, she's content. And, you know, I mean, of course, there are ups and downs, but you know, she is overall, she's really just been, since we've been at this new place for her. So you mentioned hospice? Is she on hospice? She is on hospice. Now, it's not because there's a, yeah, it's not because I asked this when we went back to the hospital. I said, I understand always, hospice is kind of a end of life thing, and they're like, no.

00:38:43.840 --> 00:40:18.480
Well, you know what, as a Medicare recipient, hospice can also be for just palliative Now, granted. Partly, it was because when we had to take her back to the hospital the defeat that we were supposed to move her home for the temporary move. She had, definitely, she had an infection. She had some there, you know, she's 91 so they're, you know, they're, they're health issues. There's nothing chronic or, you know, there's not, I shouldn't say there's nothing chronic, but there's nothing like, knock on wood, that I've been, that I've seen out of the hospital. There's no like diagnosis of like, you've got X number. She doesn't have any kind of timeline on her. But as I understand it, they just will provide the service to people that are, you know, they she wasn't well at the time and needed to have the support, you know, obviously, in a memory care facility, but also the medical level support. And as it was described to me, that, you know, unless she starts, you know, getting so dramatically better physically, like, all of a sudden she's like, you know, jogging or whatever, which is not the case. Again, she's ambulatory, but she's not jogging, but they're like, if she just even stays the same, you know? And you know, let's just face it, the reality of like, aging as you start to get less and less well, even as you're stable, but less and less well. So they'll just continue to provide that service. So having that hospice overlay, even though it's not an end of life, reason, has been huge, huge, huge. I would tell everyone to take advantage of that. Look into it and ask your health care plan. You know what?

00:40:14.219 --> 00:40:21.380
What services? What hospice services are available? Because it's been a game changer, really,

00:40:21.800 --> 00:40:24.559
it sounds like it's, maybe it falls under palliative care.

00:40:25.579 --> 00:40:27.500
I think it's palliative care. I think it'll

00:40:27.500 --> 00:40:31.159
change to hospice when she's, you know, when she's closer to dying.

00:40:31.639 --> 00:41:05.699
Yes, yeah. So, I mean, and my mom is a, really, she's a sturdy, solid lady. She really is. I mean, her whole family, you know, send my dad too. My dad was almost 94 our dad. Our dad was 94 almost 94 when he passed away. Like, you know, they're, they're solid people. And my mom comes from Hardy, Welsh and Scottish stock, so, so she's, you know, like I said, fully ambulatory, but, yeah, age and all the things, definitely, you know, come to play. But it's, it's, I would definitely advocate, recommend the, you know, look into hospice and palliative, because it makes a huge difference.

00:41:06.239 --> 00:41:10.019
And so are you back to your schedule of seeing her every couple of weeks?

00:41:10.318 --> 00:41:31.818
Yep, I'm out here now. Go and see her. I may see her later today. I'll see her tomorrow, for sure. And yeah, I still come out. I'll still come out every two weeks just to be able to have a even if it's just a short visit. I mean, I will say it's, you know, one of the things that I think probably many people relate to the hard part, one of the hard parts is, you know, you're there with them, and it's a great thing.

00:41:31.818 --> 00:41:40.719
And I'm super grateful, you know, very blessed to still have my mom, many of my friends, for that I grew up with, that I'm still very, very close with. You know, both parents are now gone.

00:41:41.679 --> 00:41:54.458
So I'm grateful for that, you know. And at the same time, like, you know, it's not the same, my same mom as you know it was, which is, you know, that's life. So it's a little you just have to kind of process that.

00:41:51.759 --> 00:41:57.518
And sometimes it's, you know, sometimes it's a tough thing.

00:41:54.639 --> 00:42:10.559
But I mean, she's always cheerful and happy and, like, it's a positive thing to be with her and recognize you. Yes, she does. She still recognizes me, my husband, my sister, her sister, her cousins, her nephew.

00:42:10.559 --> 00:42:14.518
I mean, she's and some of her dear friends, like, she still remembers who they are

00:42:15.000 --> 00:42:16.980
and happy to see you when you come to visit.

00:42:16.980 --> 00:42:19.019
Yeah, yeah, that's great.

00:42:19.199 --> 00:42:32.480
So it's been a journey, I will say that. But you know, I think just groups like the caregivers group that I've been a part of your group has been really valuable. That group of folks wonderful.

00:42:29.480 --> 00:43:01.739
They're more they're a little bit senior to me, and in that that's their spouses that they're supporting, giving care to. But just nevertheless, like that was super valuable, just insight and experience, the lens into, you know, now, and a lens into the future for me, like, I'm very grateful for that. And the fact that you provide that service for folks is really, really important that, and just friends and, you know, family, obviously my spouse, my sister, my cousins, my best friends, like, that's been a huge part.

00:43:01.980 --> 00:43:15.539
Just having the outlet, you got to have somebody to like, they are my husband and my sister, like, foundational and, yeah, absolutely. Just, I couldn't do it without them. And then just having my friends to be able to talk to, wow.

00:43:15.539 --> 00:43:18.659
Well, what a story. Thank you for sharing it.

00:43:18.659 --> 00:43:34.880
Yeah, I really appreciate you sharing and coming on this morning, and you know, taking us through that so yeah, you're welcome, Jefferson, thank you so much for coming today. I so appreciate it. Our listeners will too. I'm glad. Thank you.

00:43:35.119 --> 00:43:36.079
Thank you so much.

00:43:36.139 --> 00:43:37.460
Thank you, Barbara, for everything

00:43:42.860 --> 00:44:26.420
you Marc, 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 310-362-8232, 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 at dementia discussions.net.

00:44:22.519 --> 00:44:42.980
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

Letting Go of the Plan: Accepting Memory Care for a Parent

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