Jan. 14, 2026

Navigating Dementia From Afar: Lisa Jo on Caregiving, Grief & Unexpected Blessings

Navigating Dementia From Afar: Lisa Jo on Caregiving, Grief & Unexpected Blessings
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Season 4

In this episode of Dementia Discussions, I sit down with Lisa Jo, a longtime member of the support group I co-lead at the Mary S. Easton Center for Alzheimer’s Disease Research at UCLA. Lisa has been navigating the complex, emotional, and often overwhelming role of long-distance caregiving, and today she opens up about her mother’s dementia journey, her father’s decline, and what it was like to step into full-time caregiving during one of the most difficult times in her family’s life.

Lisa shares so honestly about the unexpected challenges she faced—sun-downing behaviors, shifting family dynamics, medication management, caregiver burnout, and the heartbreaking realities that arise when a parent no longer recognizes you. She also gives a heartfelt look at the meaningful moments she was able to create with both of her parents during their final years together. Her story is raw, authentic, and full of wisdom for any caregiver walking a similar path.

 

Episode Highlights:

[00:00] – Lisa describes early signs of her mom’s sun-downing and the moment her mother no longer recognized her.
 [00:37] – I welcome listeners to Season 3 and share my gratitude for the community.
 [01:31] – Introducing Lisa Jo and her connection to our UCLA support group.
 [02:02] – Lisa paints a picture of who her mom was before dementia—independent, outgoing, and full of life.
 [03:23] – The beginning of her mother’s cognitive decline and early safety concerns.
 [04:40] – The emotional toll on her dad as her mom’s personality and memory shifted.
 [05:50] – Life in independent living and when Lisa decided to seek out caregiver support.
 [07:02] – Lisa realizes her dad is overwhelmed and begins exploring outside help.
 [08:40] – Moving in with her parents for 15 months during her dad’s illness and recognizing the true extent of her mom’s impairment.
 [10:38] – Her dad relinquishes caregiving responsibilities as his own health declines.
 [12:01] – Balancing full-time remote work while caregiving for both parents.
 [14:40] – Challenges in communication, accusations, and emotional upheaval caused by dementia.
 [15:50] – A bittersweet moment when her mom mistakes her for “someone familiar.”
 [16:50] – Rebuilding an adult relationship with both parents and finding unexpected closeness.
 [18:52] – How fortunate timing, flexibility, and family planning made care possible.
 [20:00] – Her father’s passing and preparing her mother for the transition to memory care.
 [21:37] – Moving her mom into memory care and the thoughtful steps she took to ease the adjustment.
 [23:46] – Personalizing the new space with colors, familiar furniture, and meaningful artwork.
 [26:07] – Navigating her mom’s grief and repeated questions after her dad’s death.
 [28:21] – Using fiblets and reassurance to support her mom emotionally.
 [30:58] – Long-distance caregiving today—video calls, late-night reassurance, and new complications with care-facility rules.
 [33:18] – Adjusting to limited access and advocating for communication options.
 [34:31] – Traveling back East periodically and managing a new diagnosis: multiple myeloma.
 [36:06] – How the support group has helped Lisa through education, connection, and emotional release.
 [37:30] – Navigating guilt as a long-distance caregiver and honoring her parents’ wishes.
 [39:45] – The biggest silver lining—deepening her relationship with both of her parents.
 [42:16] – Closing the conversation with gratitude and reflection.


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,

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00:00:00.000 --> 00:00:21.379
And then also about mom. She would get sun downers so she wouldn't recognize exactly who I was, like she was very familiar. She would talk to me like she knew who I was, but she didn't know I was her daughter. But she used to drive me crazy. She would pick at her nails, and I would say, Stop doing that. She says, You're just like my daughter. She tells me the same thing.

00:00:23.179 --> 00:00:24.679
What did she think you were?

00:00:24.980 --> 00:00:28.280
I asked her about it.

00:00:24.980 --> 00:00:31.579
She said I was just someone very familiar and very easy to talk to.

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Hello and welcome to season three 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, and welcome to season three. I'm grateful for you, and so looking forward to another year of us being together.

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Hello and welcome to dementia discussions, the podcast for and about caregivers. Today, on the show, I'd like to welcome Lisa Joe. Lisa attends the support group that I co lead at the Mary s Easton center for Alzheimer's Disease Research at UCLA. So welcome to the show. It's great to have you here today. Thank you. Thanks for having me.

00:01:52.959 --> 00:02:01.239
Absolutely thanks for having the courage to come on here. Yeah, that's

00:02:02.879 --> 00:02:50.500
so, you know, I asked you, because I know that you're a long distance caregiver, and I hear the struggles, so we can talk about that, but I You're here to talk about your mom, and I've never met your mom, obviously. So tell us a little bit about your mom, like who she was before dementia, you know, her career, about her personality, okay? And she's just a fun, very outgoing person. She's self reliant, she she has no problem with mobility. She can feed her, yeah? So So she, you know, she had that going for her, um, but yeah, I'm like, I said, I'm just so fortunate with with her attitude is great.

00:02:50.500 --> 00:03:01.919
So, so she realized she did not know her way. It must have scared her, yeah, and that's it, yeah, she gave up the keys. So from then on, your dad did the driving.

00:03:02.099 --> 00:03:05.400
And was she still cooking? They were. They're both still living at home. At that

00:03:05.400 --> 00:03:19.319
point, she didn't really cook that much. You know, they live in a continuing care facility, so they would go to the restaurants. So, yeah, I don't remember the last time she cooked.

00:03:19.620 --> 00:03:23.000
I see so they've been living at this continuing, continuing.

00:03:23.120 --> 00:03:26.120
There, right?

00:03:23.120 --> 00:03:26.120
Retirement Community. CRC,

00:03:26.120 --> 00:03:29.780
yeah, for a while. Now, how long have they lived there?

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They were there for 13, I think it's 14 years now.

00:03:36.439 --> 00:03:46.479
Oh, wow. So in the independent part, yes, I see, I say yes. And then your mom started to have problems about six years ago or

00:03:46.479 --> 00:03:54.400
so, yeah, yeah, I thought it was longer, but I looked it up and yeah, that's what the records show. Got it.

00:03:54.400 --> 00:05:01.019
The only time he got upset was when she would go into this just spin that she couldn't get out of, where she said that Dad bought a house without her knowing, and he had some nerve spending all that money without asking her. And you have to understand, my parents have been were married for 67 years. They met in college and got married, and they always said that they had like, $5 in the bank, and they never, they just always saved their money. They never fought about money, but they always, they never spent without the other one knowing. So my dad was just devastated that she would think that he would do something like that. So he would constantly try to convince her and, and this was before I went there, so he would call me so upset on the phone, and then I would have to get on the phone with her and just talk them down. And it took a little bit, but she would, she would at least listen to me and and then calm down. No, your

00:05:01.019 --> 00:05:08.399
poor dad, though, I'm sure he just couldn't believe that in all these years he would never do anything of the sort.

00:05:08.699 --> 00:05:10.560
Yeah, that really bothered him.

00:05:12.600 --> 00:05:43.300
So that was a change in her personality, right? I started noticing, like, that's unlike your mom, yes, and I'm sure you probably didn't realize, like, exactly what was happening, right, right? So then you take her, so then finally she gives up driving, or maybe they were, she's repeating stories more than usual, or something, you know, that kind of prompted an assessment, and then she was diagnosed, diagnosed with MCI, and they still continued in this independent part yes, of the community,

00:05:43.420 --> 00:05:49.300
yes, got it and just took over her medications, you know, making sure that she took her medications.

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And what did they hire help from the outside at all? No, they

00:05:53.439 --> 00:06:04.379
didn't need it. I mean, they had, you know, housekeeping come in, I don't know, every two weeks or once a month, but they're always really neat anyway. No, they didn't. They didn't need any help.

00:06:04.860 --> 00:06:13.800
And then what changed that? Like, at what point did something change?

00:06:07.680 --> 00:06:18.540
Where you thought, hmm, like, I don't know how to has something prompted you to get into a support group at some point, right?

00:06:18.959 --> 00:06:43.300
Oh, I got into the support group when mom was first diagnosed, because I wanted to learn about it. And yeah, so that's why I joined. Have you been coming to support her for six years? Oh my gosh. I've been coming since before covid. I think I met once on campus, and then I think, my gosh,

00:06:43.899 --> 00:06:48.819
off site, wow, time flies. Yeah, unbelievable.

00:06:49.180 --> 00:06:51.399
Okay, I don't even know, Were you part of it

00:06:51.399 --> 00:06:56.199
back then? Oh, yeah, yeah, yeah, wow, before Monica, yeah, yeah, yes.

00:06:56.199 --> 00:07:02.819
Okay, wow, yeah, just, you know, you know back Yeah, Chapel Hill, North Carolina, so

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at what point did you think maybe I need to start spending more time back there? Like, was your dad getting more stressed with caring for her? Or what was happening?

00:07:14.519 --> 00:07:50.800
Yeah, I noticed that he was getting a little overwhelmed. Yeah, and I could just see that he he was getting stressed out. So I did call in someone to come in and assess the situation and then see what would be appropriate. And I wanted someone to come in once a week to help him put, you know, fill all the pill boxes up, and he was resistant. He said he didn't need the help. And I said, Okay. I said, that's fine.

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I said, But if, if you start missing, you know, more than one, one or two times, then I'm, I'm going to call someone in and, and he said that, yeah, that's fine. And, and then I didn't have to, he, you know, was on top of it, so for a while. Okay, great, yeah, yeah.

00:08:10.680 --> 00:08:24.560
So I think the reason that, you know, I went out there for 15 months, and this is when I learned a lot more about mom.

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You know, my dad was sick with with pancreatic cancer, and I knew he wasn't going to be able to take care of her and take care of himself, so I went out there, and I think that's when I I realized how bad she was, I mean, and she's not even bad, but just like, I was in shock, and I had caregivers coming in so that I could work, because I'm still working, or, you know, if I wanted to go to lunch or something, so I had caregivers coming in, and I think I had gone shopping, and I come back, and the caregiver was frantic.

00:08:56.379 --> 00:09:22.580
He's like, you're a mom. She I was in the bath, cup or something. And I was like, Oh my God, she's never done anything like that before. So it was just things like that that just really woke me up. Because other than that, she was always in a good mood and great and kept herself entertained. And yeah, so,

00:09:22.578 --> 00:09:30.078
and you wouldn't have known about that had you not decided to move there. Did you move? He moved in with them, right?

00:09:30.379 --> 00:09:34.759
Yes, yeah, wow, yeah, they have an extra bedroom and bathroom,

00:09:35.360 --> 00:09:43.659
so then you really got to see how impaired she was, yes, and your dad was okay with that, because he was sick, he was diagnosed.

00:09:43.899 --> 00:10:38.480
He was relieved that I came out, because he knew he couldn't handle it. And my mom is his just number one, like, he's like super men. She like He will do anything for her. Her to to his detriment, you know, I used to have to yell at him, like, stop engaging with Vaughn when she gets like that, because you're just wasting your energy, you know. So I would say, come get me and I'll talk to her. I said, you need to conserve all of your energy, yeah. And so he gave up every like, you know, when I got there, he gave up everything you know, taking care of the house, the bills, medication. He still wanted to drive, and I just said no. So that was a tough one, trying to get him to drive, unlike your mom, yeah, yeah,

00:10:38.539 --> 00:10:46.059
yeah, wow. So he really relinquished all the care to you, yes, and did you? Did she still have folks coming in at that point.

00:10:46.840 --> 00:10:49.779
So in the beginning, I didn't, I was doing everything.

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So I was taking dad to his appointments. So that's when I would have someone come in to, you know, be there for mom. And then he had to take medication every four hours, or, I don't remember how much. So I was waking up, you know, a couple times in middle of the night to give him his medication. And then next thing I know, I'm just exhausted. And so, so someone said to me, Well, why don't you just get someone to come in at night? It never dawned on me to do that like I was just so I think it was just so tired and so out of it. So then, so then it started, when dad started getting Yeah, but I tried to do it all for for a long time, which I probably should have gotten help earlier,

00:11:33.259 --> 00:11:43.600
yeah, but of course, who gets help earlier, right? No, yeah, yeah. You have to be exhausted and depressed and irritable and yeah, yeah, of course,

00:11:43.779 --> 00:11:49.960
and your family members to tell you you look like crap, yeah, yeah, yeah, there you go.

00:11:46.539 --> 00:11:49.960
Wow.

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And now, all this time taking care of your mom and your dad, are were you still working? Like, yes, wow.

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So you're still holding a job remotely, I guess,

00:12:01.679 --> 00:12:05.940
yeah, working full time on, you know, West Coast time.

00:12:06.120 --> 00:12:14.100
So, yeah, that was kind of crazy too, because I would try to get stuff done in the morning when it wasn't time to work yet.

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Yeah, it was a lot of juggling.

00:12:16.980 --> 00:12:25.340
Yeah, it sounds like it. So, oh goodness. So you're and is your mom finally diagnosed with Alzheimer's at some point?

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You know, that's a really good question. I see it in her paperwork, you know, her medical paperwork. But I don't know when she got the diagnosis, but some point along the

00:12:35.419 --> 00:12:40.360
way, she did. I got it, yeah, and when you said before, you know dad,

00:12:40.360 --> 00:12:44.740
he would just get so upset because he couldn't talk her down.

00:12:45.458 --> 00:12:49.479
So as other things, not not just like you bought a house elsewhere,

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it was typically that, Oh, she got, she got sick and tired of him once and kicked him out of the house. But he, but he didn't leave. He was like, I'm not leaving. Like, oh my gosh, yeah. Oh, it was nuts. It was nuts. Yeah, so she's yelling at him to leave, yeah? But then she would tell me that dad wanted a divorce. He he doesn't want to be with me anymore, he doesn't like me, doesn't want me around, and I couldn't be further from the truth. And then she would get mad, and it only, it only happened in one span of time, and she said that he needs to go, go find another place to live. And so I said, Well, why don't we do this? Because I couldn't talk her down from that. I said, you do have two bedrooms. Why don't we just move dad into the other bedroom, right? We'll see how that goes.

00:13:45.879 --> 00:14:03.839
She didn't want to do that. She wanted him out of the house. And then finally, we just convinced her that that's not going to happen. Yeah, it was crazy. Poor dad married, yes, oh my god. It just was, that's like, Oh, the poor guy who was, yeah, it was the worst. The worst.

00:14:04.139 --> 00:14:10.980
Did she ever accuse him of, like, have infidelity that she ever, oh, no, no. Okay, that's good.

00:14:11.220 --> 00:14:27.500
No. It was just he doesn't love her, so she doesn't want to live with him, and he's, oh, it was a lot of it was he's not taking care of her. Yeah, it was nuts. This was, you know, probably at the 65 or 66 year mark of their marriage.

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Oh my gosh, like they gave it the good old college try, you know, oh, goodness, wow. Okay, so over time your dad progresses, yeah.

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Yeah. And then also about mom, she would get sun downers so she wouldn't recognize exactly who I was, like she was very familiar. She would talk to me like she knew who I was, but she didn't know I was her daughter. But she used to drive me crazy. She would pick at her nails, and I would say, Stop doing that. So she was doing. It one time in the afternoon or early evening, and I said, stop. She says, You're just like my daughter. She tells me the same thing.

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I was like, Oh my God.

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What did she think you were just I asked her about it.

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She said I was just someone very familiar and very easy to talk to. Oh, okay, yeah. And then also, we were sitting at dinner, the three of us, and mom didn't know I was her daughter, and my dad was like, and dad doesn't understand the whole fiblets and all that stuff, right? So he's like, she's your daughter and I and she's looking at me, and I said, Yeah. I said, You're my mom. She said, Well, how did that happen?

00:15:50.259 --> 00:16:03.480
Wow, how do you get how do you answer that? I said, You plopped me out. Oh, goodness. How did that happen?

00:16:04.320 --> 00:16:15.720
And then she just started laughing, good, so you broke the moment, yeah, yeah, it'll heal her, yeah, yeah. She was good with that. Dad wasn't.

00:16:12.659 --> 00:16:27.139
He actually would get upset with me because he thought I was teasing her, like not at that moment, but there'll be times that and my mom, she and I had a different relationship than dad.

00:16:22.220 --> 00:16:49.659
Dad was very stoic and and serious, very dry sense of humor. And Mom and I could, like, banter back and forth and bicker, and it was no big deal, right? We forget about it. Well, she forgot about it five minutes later, and, you know, it just but he, he perceived it as as we were fighting. Oh, yeah, but she, she would even say to him, we're not we're not fighting.

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We're fine.

00:16:50.919 --> 00:16:54.519
So would He say, hey, stop fighting with your mom. Yeah.

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He's like, Be nicer to your mom. Oh. And then I would and, and sometimes he would say just to me, so I would say, Tomorrow, I would yell over to her, Hey, did I some say something that bothered you? And she's like, No, yeah.

00:17:09.059 --> 00:17:21.500
Who knows? She probably, at that moment she had probably already forgotten, yeah, oh goodness so. But generally, it was a good relationship with the Oh yeah, yeah,

00:17:21.559 --> 00:18:27.319
oh yeah, yeah, yeah, yeah. Like. That's probably one of the best things that came out of this was, you know, I hadn't experienced that much time with my parents since I was in since I left after college, right? So that's how many years ago and you you remember the relationship that you had when you were a very young adult, right? So most of your memory is High School, which you have a terrible relationship with. Your parents did, like, you know, yeah, we all did, yeah, teenager, yeah. So it was really nice to now develop and see them in a different in a different light, like, to see like how dry a sense of humor my dad had, and to be able to laugh with him and and how outgoing and friendly mom was, and everyone, all of the staff in the restaurants, and everyone just loved mom. And so the staff and the caregivers loved her, and they would say, Oh, my God, your mom's so fun. I said she was not like this in high when I was in high school.

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So it was not this fun.

00:18:31.460 --> 00:18:52.539
No. I said, yeah, it was always like, do this. Don't do that. So it was really nice to now have this different relationship and adult relationship with with the both of them. And, you know, to see my dad really appreciate me taking care of them.

00:18:52.779 --> 00:18:57.519
Yeah, that's pretty amazing, actually, that you were able to move back or so.

00:18:57.519 --> 00:19:17.759
Yeah, yeah, I was, I was extremely fortunate, you know that they had the room, they had the right insurance, and set up the proper situation for what they had expected would happen, and then work was so flexible with my schedule.

00:19:18.359 --> 00:19:19.200
Amazing.

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That's yeah, because how would you have navigated that from 3000 miles away? It would have been really challenging.

00:19:25.759 --> 00:19:49.059
So I had told my family. So when I found out about dad's diagnosis, I jumped on a plane, either that night or the next morning, and in talking to my family, I said, If work doesn't let me stay here, I'm just gonna quit. Like, that was my mindset. I'm like, I don't care, like, my dad needs me. I'm not gonna and fortunately, I never had

00:19:50.079 --> 00:19:59.680
to deal with that. So, yeah, it was, it was, yeah, yeah, fortunate, super fortunate, absolutely. So you're, when did your dad die?

00:20:00.000 --> 00:20:08.400
Me February, no, January of 2024 it was just a year in January. I'm so bad with, Oh, wow.

00:20:08.398 --> 00:20:15.898
So it's been only a year and a half. Yes, yeah, about a year and a half ago he died, and you were back there at the time.

00:20:15.898 --> 00:21:01.618
Yes. So I had made sure that mom was set up with where she was going to be after dad passed. So it wasn't like this huge loss of dad and then now huge loss of everything in her surroundings that she knew. So she had been going to let's place Charles house. They're fantastic. It's a like a senior care center with, you know, people with dementia. So I had her going there three days a week, and then at the memory care, I had asked them if I could bring her there, you know, once a week to one of their activities, so she would be familiar with the environment when she moved in there.

00:21:02.099 --> 00:21:12.900
How smart is that? Wow. Yeah, she would get to know the staff and the memory care. They got to know her. That is so great. I didn't realize that. Oh, great.

00:21:12.898 --> 00:21:23.538
Yeah, you know, it was going to be this huge void. You know, Dad's gone. She's going to have to move to a different place. I'm going to be leaving soon. So I wanted

00:21:23.599 --> 00:21:36.259
everything familiar, yeah, it's gonna be changing, wow. So she was going, sounds like to like an adult daycare program a few days a week, and then, and then you moved her eventually into, yeah, Memory Care Unit, uh huh, yeah.

00:21:36.259 --> 00:21:37.279
And how did that go?

00:21:37.819 --> 00:21:42.579
It went rather smooth.

00:21:37.819 --> 00:22:37.940
So I was told, you know, not to visit her. But then my situation was so different. So I think I stayed away for maybe three to four days or a week, and she was okay, like, I don't think she remembered, but she, apparently, she, she did try, like, you know, getting out, like walking to the door, not like, you know, let me out of here, but she was just curious, like, oh, there's, there's the outside she's used to having freedom. So she would try the door, and then, you know, their their rooms, the outside door doesn't have a lock on it. So she would move a piece of furniture to block the door, because she didn't want someone like breaking in coming into her room, right? Yeah, she, she, you know, didn't really realize, so that took a bit for her to get over that. But, I mean, I could totally understand that you're like, your door can't lock, who's gonna come in? Right?

00:22:35.000 --> 00:22:40.519
Right? But, yeah, so she adjusted pretty, pretty well.

00:22:40.759 --> 00:22:47.319
Makeup, something. Is it like a fiblet to say, hey, where you're going to be moving out of the house?

00:22:47.319 --> 00:22:50.500
Because that's where your folks have lived all those years. Yes.

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So I started saying to her, you know, this house is so big, you don't need anything this big. And she would agree.

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She was like, You know what, you're right? I said, so, yeah, so we need to start looking for a smaller place. And this was when dad was around, too. And so she, you know, she agreed. How long she remembered it, I don't know, but, but then when she did move in to the memory care and I would visit, she would think it was my place, you know. Oh, your place is so lovely. This is so nice. And, yeah, so this is where you stay. So like, when I would say goodbye, that would kind of throw her. She said, i Isn't this your place? And I said, No, you know, I have another one. Yeah, somewhere else. And I said, you know, this is where you can stay, though, this is great for you. Doesn't this look comfortable? Oh, yeah, it's great in here.

00:23:46.180 --> 00:23:50.319
And you had set it all up with her furnishings and everything.

00:23:50.920 --> 00:24:19.859
I had them paint the walls like they had the typical beige blah. So I had thought I chose a nice light gray. It ended up looking like a very light blue, but a very nice light blue, and everyone loved it, because it's the college there, the Tar Heels right are blue. Everyone loved it, and it was like the college color.

00:24:16.980 --> 00:24:54.519
That's hilarious. So if I thought you did that kind of threw me, like, why would you not paint their room a happy color? Like, or so anyway, so the caregivers even loved it, like, oh my god, it's so nice to come in here. It's like, bright and airy and yeah, but yeah. So I had moved in, you know, buy a different bed for mom, but all of her bedding, her her recliner and the ottoman, this really beautiful, like console table, her dresser, you know, her clothes, her shoes, bunch of artwork

00:24:54.878 --> 00:24:59.259
from the house, yeah? So that some things looked familiar and other things were new.

00:24:59.799 --> 00:25:22.700
Yeah. So the bedding, so I didn't know this either. So the bedding and towels had to be the ones that they supplied because, I guess, for laundry purposes. And that kind of bummed me out. But it was like, what, you know, whatever. I think they still use her bedding, but their towels, yeah, so, you know, she was fine. She still can't find her room.

00:25:23.240 --> 00:25:26.000
Is there a picture of her outside?

00:25:26.000 --> 00:25:50.079
Yeah, there's a picture her name. And they have this poster that she loves from the part of the town where she grew up in northern Italy. And you know, it's this big yellow apple, and it's in Italian. It's written on there. And we'll walk by it, she would tell me, do you know what this says? This is when she's in now, in the memory care. Do you know what she's and she would read it to me, and then she would interpret it. And I'm like, Oh, that's great.

00:25:46.900 --> 00:25:54.579
She's like, but still did not put two and two together that it's there, because that's where her room is, right, right.

00:25:54.638 --> 00:26:05.219
Oh, goodness. So yeah, and they show her, I'm sure they show her back to her, Oh, yeah, yeah, yeah. So they really and how about your dad?

00:26:02.519 --> 00:26:07.019
Like, after your dad died, did she ever say, Where's dad?

00:26:07.319 --> 00:26:51.460
So in the beginning, she did it. I think I told so. I told her when it happened. I don't remember. I told her that day or the next day, I told her, and then she would and and then I would tell her again, like, then it was like every day, and she would be just like, lost with it, and so distressed. And she'd say, Oh, my God, was I there with him? What does the family know? And I said, Yeah, you were you were there, you were holding his hand, although she wasn't, but I told her, I said, Yeah, you were with him.

00:26:48.700 --> 00:27:48.460
You were holding his hand. He knew you were there. You said you loved him. Told each other that you loved each other. And they said, and he, you know, went peacefully, but then this started getting torturous for me, and have to repeat this all the time. And she had, she had a therapist, so the therapist started coming to the house, so that was really helpful, too. So he, he said to her, Listen. Oh, and my, this was really weird to me. Mom said she doesn't want to remember it, so she's burying it. I'm like, how does the person who has dimension, oh, like, be that cognizant? So, so she's healthy. You have to remember this and and it's not good for your daughter. You're making her relive this. So it did mellow out so then and then it would turn into a couple of times your father's not home.

00:27:44.140 --> 00:28:08.579
Where is he? And I tell you know he went out with friends. He would never be out this late and not call me, which is completely true like so that was really tough to lie and divert. So I used to just try to keep lying, but the moment that he passed was fine. You guys were with each other. You went peacefully.

00:28:05.579 --> 00:28:08.579
So that's all that matters.

00:28:09.179 --> 00:28:21.679
So you'd reassure her that, yeah, it went really well, that she was there, and yeah, in the moment, it all was good, and it's okay that she doesn't remember it. Yeah, that's so reassuring.

00:28:21.799 --> 00:28:36.500
And so now it's evolved to if we go out or go somewhere or want to plan some things, she's like, well, we have to tell your father. And I said, Okay, well, he, you know, I'll tell him. I'll let him know.

00:28:33.680 --> 00:28:47.019
Okay, is your father going to meet us? Um, yeah, yeah, you know, where's your father? I don't know he's running late, or, you know, he is golfing with his friends, and then she'd be like, okay, she

00:28:47.019 --> 00:28:55.720
just takes it, lets it go, okay, good. So you don't need to drag her through the hole. Well, you know, Dad died a year and a half. No, none of that.

00:28:56.378 --> 00:29:07.078
She's she's really easy to distract and divert and, you know, bring up another subject.

00:29:02.939 --> 00:29:07.078
So again, I'm really fortunate.

00:29:07.138 --> 00:29:37.699
Yeah, that's great. Really fortunate with that. So you're so now you're back in LA right and back to calling, like, how do you navigate things now? So that was really tough to go from seeing her every day and knowing how she's doing every day. So I had gotten a video device, you know, like the Amazon Echo, where I could call her so she doesn't know how to answer it.

00:29:37.699 --> 00:29:50.019
So there's this capability where you can just drop in, right? So I would just drop in, and she didn't need to answer. She didn't need so I would see her.

00:29:45.818 --> 00:30:10.739
It was also bothersome to me, because I I knew that she wakes up very often, one o'clock in the morning, and she would, she did this at home. She would start gathering everything because. She thought, you know, they were moving. She didn't think the house, independent living house, was hers, and expected people to come back and they were going to reclaim it.

00:30:08.638 --> 00:30:56.318
So she would pack up all the stuff that she wanted to take with her. So I knew she was doing that in now, in her memory care. So I would call her and she'd be up at one o'clock in the morning, you know, putting stuff on her bed, or she'd be completely dressed, ready to go to work. So I would, you know, talk to her and say, You know what? You don't have to do that right now. Let Why don't we worry about that tomorrow? I said, you know, it's really late, it's and I would tell her what time it is. Oh, my god, is that like, yeah. I said, Why don't you go to bed? Because you're going to be tired in the morning. Oh, you're right. And she would go to bed, wow, she might just lie on top of the bed fully clothed. I'd ask her, you know, if she wanted to change.

00:30:56.618 --> 00:30:58.058
No. So I said, okay,

00:30:58.660 --> 00:31:01.259
okay, just go to bed, just like that, yeah.

00:31:01.500 --> 00:31:23.240
So I would do that. I would call you know, when I so Tuesday, Thursday, I knew that she would be around. I would call you know, like when she when I knew she would be in the room. So that lasted about three months until the caregivers got annoyed that I could drop in.

00:31:18.299 --> 00:31:31.099
And apparently they must have interpreted it as I was spying on them, but I would drop in and say hello immediately, right?

00:31:31.099 --> 00:31:36.319
You weren't spying on them. You were just seeing how your mom was doing.

00:31:32.779 --> 00:31:36.319
So did they take away the echo?

00:31:36.980 --> 00:31:57.759
So they said that I couldn't drop in anymore, that I could call and they would, you know, I would call them beforehand and say, Hey, I'm going to call mom. Can you go answer the so now you have to call the staff. What do you have to do? Well, I gave up because I would ask them to replug it in.

00:31:57.759 --> 00:33:18.000
It would take a day or two. And did not let it go easily. I had a conversation with the care manager, who I've built a relationship with, and he must have spoken to the powers that be. Another resident is in the room, you know, or they have a visitor and they have financiality, yeah, they have to sign an agreement. I said, Fine, I'll have all of her friends sign an agreement that when they walk in the room, I said, and you told me the caregivers aren't supposed to be in her room, so that's on you so, so I should be able to have that in there. And I said to him, I said, you know that I'm doing this so that I can see her. I said it has nothing to do with the staff. You know, we've had numerous conversations that I know that your staff is great and that they treat her well. So I was furious, but I couldn't do anything about it. So now I call on the, you know, the common line, and talk to her, and I'll call the care manager and see how she's doing. And I had friends who would pop in and they would let me know how she's doing, or my uncle, you know, would visit. But yeah, that was that was really hard for me when camera

00:33:18.000 --> 00:33:21.559
took that away.

00:33:18.000 --> 00:33:50.559
Yeah, I have another client who also has family out of town, and they've arranged, like, a specific time twice a week to do FaceTime, FaceTime calls or Skype, whatever it is. And so that, like, maybe you can arrange that listen every you can say to them, like, what days are good for you, or these days are good for me? Can we every whatever, Monday, Wednesday, or whatever, Tuesday, Friday, you know, can we do a three o'clock call? Or, you know, I don't know, you can resonate, yeah, so that you could see her.

00:33:50.799 --> 00:34:02.400
Because then my friend suggested, like, why don't you put the camera up on the ceiling? Or, you know, high up where she can't get it. And I said, I don't want to do that.

00:34:02.400 --> 00:34:10.500
Yeah, they won't let you have a camera here. They won't let you have a camera in the room either. So, yeah, so you can try to arrange something with the staff. It sounds like you have, but

00:34:10.500 --> 00:34:15.840
then I would have to have the camera there, because she doesn't know how to work a phone. Or how would I do FaceTime?

00:34:15.960 --> 00:34:31.280
Well, usually the staff has, Oh, yeah. Like, they have a device. They can do they can call you on their device. So just a thought, yeah, that's a good idea. But now you're back to you're back to life back here checking in on your mom. How often do you get back East?

00:34:31.280 --> 00:35:07.440
I'm actually going again next week. I think it's probably been once every couple of months, probably like three months for four months, I remember when I how long I've been back. But now mom's been diagnosed with multiple myeloma, so I'm going to an oncology appointment with her. So that adds another, another dimension, exactly. Yeah, yeah, apparently it's the doctor gave. Gave me the impression that it's not really anything serious, and it's not aggressive, but we'll see what the oncologist says,

00:35:07.559 --> 00:35:10.920
Yeah, and what the treatment is, and if you want to do treatment or

00:35:11.400 --> 00:35:20.599
right and you know, she's so happy where she is right now, and I don't want to change that. I don't want to start giving her medication.

00:35:20.599 --> 00:35:24.920
And yeah, doesn't seem like there's any reason to change that, right?

00:35:24.920 --> 00:35:26.960
Wow, she's 90 years old, if

00:35:28.639 --> 00:35:30.559
this is life, right?

00:35:31.760 --> 00:35:36.260
Yeah, and who knows what the treatment or medication is going to do so

00:35:37.579 --> 00:35:41.260
to be happy and comfortable, yeah? It's like she's both right now?

00:35:41.318 --> 00:35:46.599
Yeah, she's not showing any symptoms, so I don't see why that should be changed.

00:35:47.199 --> 00:35:50.739
I guess more, more will be revealed, right?

00:35:50.800 --> 00:36:06.780
Yes, yeah, you know you said you've been coming to the support group for six years, and I wonder, has it always been helpful to you, knowing that, like the local resources, sometimes we talk about a group are not, don't pertain to your

00:36:06.778 --> 00:37:05.458
folks, I have found it extremely helpful, helpful to maybe what to expect and and how how to go about it like that's where I learned about fiblets and distraction. Yeah, it's been so, so helpful. And and then I've been able to share all of the knowledge that I've gotten from group with my family, who now my mom's brother has dementia, but he's got, like, a mean kind of dementia. And and then my friends who were starting to deal with it with their parents. So that's been really helpful. It's also been really helpful to me, because I can come there and and cry and and just say how I feel, and no one's judging, right? And so that's been that's just been priceless, because I've done that numerous times. You witnessed

00:37:06.000 --> 00:37:30.079
Absolutely, I mean, you mentioned guilt, and I would imagine there is so much guilt with you not. I mean, you were there for a year and over a year, a year and a half or so, but like all the other times, you haven't been there, and so, yeah, I would imagine there's tremendous guilt being so far away, wishing you could be there. I don't know how do you navigate that, right? Yeah.

00:37:30.139 --> 00:37:59.260
I mean, I just tell myself that this is what they planned. Both my mom and dad were in education, and their biggest fear was getting dementia and Alzheimer's. So they set up. They set themselves up where they were in a continuing care facility, and they knew that there would be, you know, next steps available.

00:37:53.380 --> 00:38:13.559
So when all this started going down, my cousins got upset that I wasn't taking mom to California, and I said, How does that make any sense? It said, This is what they planned for.

00:38:10.679 --> 00:38:17.039
This is what they wanted. This is what they told me they want.

00:38:13.559 --> 00:38:28.940
And if I move her out here, how does that help her? Now it's everything's brand new, and how often am I going to be able to visit her? I said, Now I know that staff are with her. I have friends on campus that I could ask to go visit, so that

00:38:28.940 --> 00:38:43.480
helps, like, yeah, because it seems like they did plan for that. They moved into a CCRC all those years ago because they knew you lived out of town, yeah, and they wanted to take care of themselves in the best way possible. And this was it. And they

00:38:43.480 --> 00:38:45.760
were right, yeah. And that's what they would tell me.

00:38:45.760 --> 00:39:24.679
They're like, Listen, this is where we want to be. They always told me about their health care directive, yes. Oh, so they were really proactive, which is one of the best gifts you can give your children or caregiver is to let them know your plans, what you want done. Yeah, absolutely good message to everyone. Yeah, it, you know, relieves you of that having to deal with all these big decisions when you're in crisis and and relieving you of the guilt like, No, this is what they wanted, absolutely right?

00:39:24.679 --> 00:39:26.900
No second guesses. This is they told you.

00:39:26.900 --> 00:39:31.039
They spelled it out in writing and verbally over the years.

00:39:31.340 --> 00:39:45.099
Yeah. What a great what a great message to tell everyone. Let your kids know just the way my folks let me know. Anything else that comes to mind that's kind of a, I don't know, Silver Lining through all of this.

00:39:45.880 --> 00:39:59.920
I think one thing I learned from dad's treatment, which is help, helping me with moms, is that he got so sick from his treatments, they had said that he won't start.

00:40:00.000 --> 00:40:12.300
Getting sick for at least a week. He got sick, I think, after the second treatment. So looking back, I would have not even started treatment with him because it made him miserable.

00:40:13.019 --> 00:41:15.960
So that's another factor in dealing with mom's new diagnosis. Like, yeah, and don't, don't always take the doctor's words. So they he was, dad was on hospice, and they give you this care package, and I think it was morphine, was the pain med, and they said to give, like, a whatever the lowest dosage is, right? Like, point two, five, I gave that to dad, oh, my God, it knocked him out for almost like a day and a half. And when he finally got out of it, because I thought he was in pain, he literally said, What in the world did you give me? Oh, my God, it was way too strong. Yeah. So that really annoyed me, too. He was so frail and so thin. I'm like, I don't care what you think is the minimum dose. Like, why can't I start really, really low, and if he doesn't react, then give him so, yeah. So you know your family,

00:41:16.199 --> 00:41:31.219
absolutely you know your family, yeah, your gut feeling is probably right on All right. So you learned that for mom, your mom, yeah, yeah, kind of pay attention to what your gut feeling is in terms of her treatment.

00:41:31.579 --> 00:41:40.480
So I think the silver lining for me is that I got, I was so fortunate to be able to spend time with them, yeah, that's probably the big silver lining

00:41:40.480 --> 00:41:55.599
for me, absolutely, yeah, that you took the time, that you went for it, that you made that decision, and you were going whether you're going to be able to keep your job or not, right? Yeah, you made that big decision and went for it, which is amazing. So great that you did that,

00:41:56.139 --> 00:42:01.320
yeah, I was able to just develop a whole different relationship. So that was, that was fantastic.

00:42:02.820 --> 00:42:11.579
Good that you did that, good that you were here today to talk about it. I so appreciate you. They love seeing you in group. Yes, yes.

00:42:11.579 --> 00:42:14.219
I love being there.

00:42:11.579 --> 00:42:15.840
Everyone's Awesome. You guys give great advice.

00:42:16.679 --> 00:42:19.980
Oh, well, thank you for that. So thank you.

00:42:19.980 --> 00:42:22.820
Thank you. Thank you. I hope you have a great rest of your day.

00:42:23.119 --> 00:42:28.099
Thank you, Barbara, see you soon. Alrighty. Bye.

00:42:32.780 --> 00:42:39.079
Thank you for joining us today on another episode of dementia discussions.

00:42:35.179 --> 00:43:23.360
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. 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, foreign.