Loving Mom From Afar: A Daughter's Alzheimer's Journey

Elena Berg: 0:00

It's like we have to find ways to laugh, right? We have

Barbara Hament: 0:02

to.

Elena Berg: 0:03

So little things like Alec and I joke about how she'll say, "How's your work?" and you'll give this long, enthusiastic explanation, and then she'll ask two minutes later, and you're like, you know, slightly less enthusiastic explanation, and by like the fifth time, you're like, "It's fine," and you, you know, and you have to laugh because it's like, okay, a lot more to say, but I just cannot bring myself to say it all again and again and again. Oh, interesting! Like I remember asking her once, like, God, is it? It must be hard for you, you know, not remembering stuff. She's like, I don't remember what I don't remember. I mean, I'm not the one suffering. It's other people, right? She's like, doesn't bother me because I don't remember what I don't remember.

Barbara Hament: 0:51

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 to 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. Hello and welcome to Dementia Discussions, the podcast for and about caregivers. Today on the show, I'm so thrilled to have Elena Berg. I've had the privilege of working with Elena and her family since 2023, when Mary, her mom, moved from the Massachusetts area out here to Los Angeles, and I'm sure we'll get more into that story. But without further ado, Elena, welcome to the show. It's so great to have you.

Elena Berg: 2:16

Thank you. I'm really happy to be here. I think this is an important discussion to have, so I hope it's helpful to somebody.

Barbara Hament: 2:24

I am sure it will be. Yes, I have no doubt it will be. So, like I said, your brother contacted me in 2023. He lives out here in LA, and and this is pretty typical. Your family situation is pretty typical of this kind of situation that I would imagine care managers work with is clients whose families are either out of town, and you kind of have a mixture of it all, right?

Elena Berg: 2:50

We have like quite a complex sort of story of where everybody was at the time and is now, and yeah, it's challenging, very challenging. So the backstory there is that so my parents were both academics, both you know really gifted in their worlds. My father was a quite famous physicist, Howard Berg. My mom was an amazing specialist in Latin American literature and translation. Had this wonderful global network of collaborators and friends, and a really lively, warm person. And they were living their sort of happy dreams in Massachusetts. My father was at Harvard. My mom was in various places doing, you know, a lot of work individually. You know, every year she would go to Cuba and work with a group of women there to get their works translated from Spanish and English. She went legally every year, even when that was tricky. Right? She found ways to persevere. So she's just this kind of wonderful, warm and and active and intellectual person. And you know, my dad was a little bit more of the the classic absent-minded physicist with the kind of wild long hair, and the you know his brain was in his lab, and he would kind of disappear and do his work. But they found a way, you know, that was they had they had their own balance. And then my dad very suddenly died in 2021. That's not the beginning of Mom's dementia story, but that was where it became very critical. Was you know right when he died suddenly, had a brain lymphoma that had him sort of you know he collapsed. He had gone to the lab. He had just gotten his sort of five year grant renewal. He's 88 or 87 now. Mixing up the dates, but he just sort of collapsed, and then was diagnosed with this aggressive brain cancer. And within sort of a month, he he died. And so that was a moment of crisis for the family where we all kind of dropped everything and figured out. Like whoa, what do we? You know, no, no anticipation that our father would collapse. We had started having some concerns about mom because she she just you know she was always the one who knew the dates and knew who had everything. You know, she knew where everything was. She had she remembered everything about family history. You know, my dad would be like, "That was so and so," and she'd be like,"No, that was you know on september 2, 1982, and that was you know." So she was really sharp and on it, and you know, we started noticing that she was less talkative on the telephone, and my dad started picking up the slack and talking more on the phone. I was like, "This is interesting, Dad's so chatty. He's normally the one who's like, "I'm glad you're okay." Here's mom, you know. And he stay on the phone, and and mom was talking less. And so I guess for me, that was the first sign that you know mom wasn't in. You know, that something was shifting or changing. But the reason why I bring up my dad's death is that that brought the whole family together, and then I think we started to realize, oh my God, mom is not okay, and and it you know again the the story is always more complex than that. Like leading up to that, we had actually started really pushing dad to take mom in and get her tested and find out what might be going on, and you know, like he would say,"Yeah, she just, you know, whenever she cooks a meal, you know, very traditional setup, she did all the meals. She, I have to be with her to remind her to turn the stove off, and you know, like, and it was clear

Barbara Hament: 6:34

that anything was going on. Yeah, so

Elena Berg: 6:36

it wasn't my dad's death that started it, but it was where, like, we suddenly had the call to action. Before that, my dad was kind of a barrier to that. Like he didn't, you know, this is this must be a super familiar story to you. Like he, you know, we're fine. We had we we didn't handle this, you know. And during COVID, it was very scary for us because, you know, I visited as soon as I could after that sort of initial COVID window, and in fact, they weren't fine. Right, their house was not clean. Like they, mom didn't look well. Like it wasn't fine. So there, there were all these things that were coming together. They managed to get through COVID, and we think, okay, let's start to figure this out. And then, as I said, my dad, you know, poof, and we, you know, got her care in Massachusetts by then. So I, you mentioned this is a long introduction. I'm sorry. Oh yeah, it's

Barbara Hament: 7:33

okay. This is this is exactly right how things start. They're subtle, and people don't notice, especially your dad, who's living with her,

Elena Berg: 7:42

and he noticed, like, oh yeah, whoever is terrible, right? Like he he noticed, but it my father wasn't it wasn't easy for my father to to he liked to have his privacy in his home, and he didn't want he didn't like going to doctors, and he didn't want people coming. Like it, it was hard for me to get people to like come in and clean for them, or you know, for me to help them because they're like, "Oh, our fonts are too expensive." I don't, you know, we don't need any help. So I think my dad was the major barrier to really paying close attention to what mom needed. And then when my father died, and and my yeah, these two older brothers. I have one brother in LA who's Alec, who's the one that you interact with, you know, interact mostly with. My oldest brother Henry, who lives in the Seattle area, and then there's me, and I live in Paris. And we have moved in many places, then you know, living in many places all our lives. So it's not like this is a new story, you know, that we're suddenly apart. We've always been a family that's moved around and explored the world a lot, and so my parents have been used to us being spread everywhere. But we came together and we got care for mom. In you know, we got more medical attention for her to understand. Okay, what is the situation? What you know? What do we need for her? And we got in-home care. We realized we can't leave her alone. I spent quite a lot of time there, but I had a you know I have family of kids. I have a job. I I couldn't live with them on full time, so I spent a fair amount of time with her, and we got nursing care in the home with her, and that worked for a while, and it got to that very quickly. That was yes. I mean, it precipitated by my dad's death, which was really awful for mom. They had been married 57 years. You know, many ways seemed like you know they weren't very similar in a lot of ways, but they were in other ways. They they had their own dynamic. It's always easy to be critical of how people manage things, but they really loved each other. And when he died, and it died without any warning, she just it was it was a really really tough time for her. And she just wasn't. She was still her lovely self. But she was just in shock, and so I think, you know, again going into the home, I was sort of the one who was on the ground there, you know, getting mom through the day-to-day kind of life. Alec came through and spent time there. It just was really clear, like she can't. She she is way beyond being able to function on her own, and the only reason why she hasn't gotten care yet is that dad was sort of masking the. He was, you know, he was intervening in a way. I don't think and kind of

Barbara Hament: 10:31

filling in,

Unknown: 10:33

filling in,

Barbara Hament: 10:34

right?

Elena Berg: 10:34

And as long as he could kind of keep mom going, he he didn't necessarily see the emergency in getting care, and he also, you know, those things were tough for him, emotions and understanding other people. I mean, he would probably be diagnosed somewhere on the spectrum, and you know, but he never. That was not the era when that was done. Like he just wasn't all that and empathetic, or he wasn't the person who was going to sound the alarm bell and be like, "We need to get you know help for mom.

Barbara Hament: 11:03

Something's wrong with mom." Yeah, yeah.

Elena Berg: 11:05

It took sort of the rest of us noticing little things, you know, forgetting when people's birthdays were, mixing up, you know, oh, you were born. Where were you born again? You know, like mixing up things that mom knew cold. So, yeah, that that's sort of the beginning. That was sort of before you came on the stage. There was the crisis of Dad's death, the kind of finding an immediate support network for Mom, and it worked okay for a while. She loved her home. She had a view of the Charles River, and she used to talk about like, you know, the geese on the river, but and she had her friends. She had some very close friends who were who would come and see her. But otherwise, I think it was very lonely. And I think those kinds of in-home care situations are very difficult because often these are people who don't know the family. They may not. I don't know how how you know their employment context, but like they they may not. They may be more or less invested in really paying attention to what that person needs. Right? They're not going to let them, or they will make sure they eat, but they may not be engaging with them.

Barbara Hament: 12:19

And your mom is not a demanding person. She's no, no,

Elena Berg: 12:24

and that's a problem sometimes. Like she is not demanding to an extreme. Where she, the example my Alec and I always give is that, like you know, she went to a restaurant once, and Alec at the end of the meal was like how was your meal and she's like well it wasn't at all what I ordered but it was good and so most people would be like oh excuse me I ordered the fish not the chicken right but she's like well here it is he said so I will eat it and I did enjoy it right so that's her personality, and so that that's a wonderful quality. But when you're in a position where you need to say, "I need help. I don't know. I don't know how to do this anymore. I'm hungry." You know, she lost a ton of weight. Probably a lot of it was grief, but I think it was just that, you know, the caregivers would say, "Are you hungry?" And she'd be like, "I'm fine," right? Yeah, I just don't think she knew how to advocate for herself,

Barbara Hament: 13:29

right? And it's also going to ask about that, like, yeah, generation, right? Generational. I was going to ask about that, like, trying to decipher between grief and memory loss. That must have been a little tricky because, yeah,

Elena Berg: 13:41

yeah, but it was a, it was really clear. I mean, you know, it's funny as I talk about it, I'm like, oh yeah, no, it wasn't quite like that. You know, I'm almost like my memory of exactly how how all those pieces fit is not perfect because it was a shock for all of us, and and COVID is on the heels of COVID, right, which is already really difficult because my parents and I think that aggravated the beginnings of mom's Alzheimer's because they were isolated. They, you know, they were scared. One of the things I noticed when I would visit, so I was the kid. So you know, again, ping ponging in my head. But one thing that's interesting about our family that again maybe you encounter with other families is that there's sort of a division of labor. My oldest brother is the he's always been sort of really good with sort of finances and organization and kind of the top level, you know, how things should work. Alec is like amazing. He will be you know the first person to arrive at the ER, he'll drop everything, he'll just do it. He doesn't talk about it, doesn't complain about it. He just you know I don't. Sometimes he does stuff, and I'm like, you did that? I didn't know you did. Whereas I would been like, oh, I had to drop everything. You know, he just I you know. Generalize everything, and then I'm the like emotional anchor. I know her the best. We were very close, you know. I I know kind of her how her mind works or did work. I know a lot of the weird things she'll say. I know why she says those things because they connect to something. And so someone might be like, "Why does she think that she needs to take the train back to Boston?" Like, wow, because she spent years doing huge train travel across the country. You know, like, so I have a lot more of an internalized sense of like who she was when her mind was healthy, and I'm now also reading all of the letters she wrote to her family from the. Let's see, it would have been 1954 when she left home as a 14-year-old to go to school. My grandfather kept every single letter she ever wrote in perfect chronological order, with little labeled envelopes until 1987 when he moved in with us and lived with us for like 13 years, I think it was. So, so I have also this. I'm piecing together a story of my mom that maybe I didn't know before, and I keep seeing things coming up in my interactions with her that, like, oh, you mentioned this in the letter in 1955. That's

Barbara Hament: 16:23

amazing.

Elena Berg: 16:24

Yeah, so it's kind of fascinating because it's like you're trying to get to know a person that maybe you didn't really even know, and when their mind was healthy, you're trying to, you know, you're pieced together.

Barbara Hament: 16:34

Yeah, you're

Elena Berg: 16:35

working forwards and backwards at the same time. So we have our own different roles, and as sort of the emotional anchor, you know, I was also the one that was best able to manage being around dad. I had a better relationship with him, closer relationship with him. He he was kind of a difficult father, and partly because of his sort of connection to his lab, and he would sort of be forgetful of other things. And he had, you know, it was hard for him to connect his sons. And I think as I and I was the youngest, and so he somehow was able to connect with me better. Maybe because I was a girl. Maybe because I was younger. I mean, who knows?

Barbara Hament: 17:18

Who knows, right? Kinder

Elena Berg: 17:20

to me than he was to them, warmer, more giving, and I spent a lot more time around him than my my brothers did. And so I was sort of the one who would take my kids, and you know my husband and my kids, and you know I would visit much more often. I was always the one who would kind of go into there. You know they were both borderline hoarders. It was not an easy place to be, but I somehow had more tolerance to manage that space. So I that has always been my role. Just okay, I'll go in. I will, you know, clean. I will make sure things happen. I'll report back. But it feels like parachuting, right? Because I lived far away for a long time, so I come in and I leave again. I come in, right? So that's been my, and you've known me in that role too, because I do the same thing. I come in with the kids, and I am full time focused on mom for you know a week, and then I go again.

Barbara Hament: 18:17

So, so yes, yes, that's exactly how I know you. Um, so your mom back east, 24 hour live and care. It sounds like, and then at what point did you guys decide? Like, what was it that you decided? Okay, mom needs to move somewhere closer to one of us. Yeah, was it something that happened with her? Yes.

Elena Berg: 18:39

Yes. So we had our original thought was, well, mom loves Boston; she has her network of people there. We looked into retirement, you know, assisted living communities for her as kind of the next step, and that was sort of the plan. And then one day, while one of her actually really lovely caretakers was, you know, making a nice meal in the kitchen, mom decided for like probably the 15th time that day to go and check the mail. That became one of her weird, repetitive, you know, just go check the mail, and she did it without

Barbara Hament: 19:19

him. Yeah,

Elena Berg: 19:20

exactly. And she fell. She fell down, and you know. And I know that that the woman who was with her felt terrible, right? Like I let your mom fall, and it's like, no, it's okay. You know, she was checking the mail for 15th time. You can't follow her around. Mom didn't ask for help. She just did this repetitive behavior that comforted her, and she fell and she fractured the upper part of her femur and ended up having to have pins, and so it was kind of akin to breaking her hip. But she and we thought, oh my god, you know, we none of us are there. And what are we going to do when none of us are there? And this happens, and that was the first test of an emergency medical situation. And it was Alec actually who was like, "We we need to move mom. Like she needs to be closer to one of us." Emotionally, that obvious person Polly would have been me, but I live in France, and the idea of moving mom into the French medical system, the French system at all, even if it were easy bureaucratically. I mean, mom can; she's has an amazing capacity to learn languages, but and she speaks French pretty well because we lived here for a year when I was small, but that just doesn't seem like the right move for someone with dementia, and I don't know. It just it just wasn't the right move. But that was really hard for me because I'm like, well, I wanted. I sort of imagined I would be that person, right, doing that job. Probably, if you were here in the states, you you would have been that person. And women, you know, frankly, a lot of it is there is sort of gendering there where the daughters often end up being that in that fold, and

Barbara Hament: 21:11

and that's just your personality and the history with your folks. Yeah,

Elena Berg: 21:16

but there's another piece of this puzzle I need to need to tell. But the so Alec actually was really proactive about like we need to think about this, and then he was sort of saying that we should move her to to L. A. There's a and you know there's a great assisted living center here that's focused on memory care. At the time they lived in Westwood, right? Like it it just all fit. It was like okay. And the piece that I need to tell is that my dad was, I mean, I don't know any other way to put it. He was a miser. He squirreled away the penny, very frugal, never spent any money, squirreled it all away. And my mom never earned much in her positions. My dad earned more, but still, you know, he's a professor. He wasn't like a businessman, but through years and years of kind of squirreling, that left a sizable chunk of change. That my brothers and I sort of unanimously are like this. This goes into mom. Mom has given up so many things to support this family in a way that my father never had to. Partly for the generational reasons, right? He got everything he ever wanted, and then he like fell down and died, and didn't have to suffer, right? Like he got everything. And mom, oh, was always the one who like gave up the job, worked several different jobs instead, did all of the sacrifices,

Barbara Hament: 22:37

sacrifice, sacrifice, yeah, ever

Elena Berg: 22:39

cooking, did everything. Like she was the heart of the family, and we all three of us were like, absolutely, this is where the money goes. So that was nice, right? There was no, no, I want money. It was just like goes into the best care that we don't want to waste money, but we want mom to have everything she needs. And I think if I had been the one next door, I probably, I probably would have taken on the role that you've taken on, right? I would have taken absolutely. I mean, I just feel like it would be probably impossible for me not just who I am. But Alec has a very busy life, and I think he's a little more comfortable outsourcing because he has a life where a lot of what he does has to be outsourced. You know, he's a he's a writer in the Hollywood world. He has people, and I think for him, the notion of having a person, having people who who had specialties came more naturally than to me. Where I'm like, you know, I don't even have someone who comes in and you know, I do everything myself.

Barbara Hament: 23:39

Right, and you would have done that absolutely. Yeah, yeah.

Elena Berg: 23:41

So I'm in a way it was sort of like a this I noticed you know in the notes that I was reading for this like the silver lining and I'm like in a way the fact that my dad did this kind of squirreling, it gave us this gift that we could give back to mom. The fact that she is in LA and not next door to me means I I can't you know completely focus all my energies on her.

Barbara Hament: 24:09

Exactly can't slip into that role of taking care of her,

Elena Berg: 24:12

which would have become all consuming. It's what I do. I do it in my work. I get into all kinds of trouble for that in terms of just overgiving and not knowing where my boundaries are, and you know, but they said they needed this thing. I'm like, yeah, but it's dinner time, you know, like no, but so I'm. I feel like this. It would

Barbara Hament: 24:32

have been harder with your mom, yeah, yeah.

Elena Berg: 24:35

But I miss her terribly. So that's the that's the worst, most horrible part of it is that I love her. You know, I want to spend time with her, and I don't actually. I mean, it's sad that she's changing, and this is a really crappy disease that I hate. But she's mom. She's just she's who she is, and I want to be there.

Barbara Hament: 24:56

Yeah, it's hard.

Elena Berg: 24:58

Yeah, there's room for tears.

Barbara Hament: 25:00

Yeah, I I still get it. Just personally, you know, my folks are on the East Coast. I'm on the West Coast. I'm in the business. I couldn't care for my folks either. Yeah,

Elena Berg: 25:12

it's hard. It's hard. It's hard not to be there. We, I think, it's a real lesson to how like families have evolved over time. I'm an evolutionary biologist. Actually, that's my disclaimer. So I think. What did you say? I'm an evolutionary biologist. So I think on the long term, how do families evolve? Well, this makes sense, right? We are emotional and we miss each other because

Barbara Hament: 25:34

it

Elena Berg: 25:34

doesn't make sense for humans to be this far apart from their, you know, from their level.

Barbara Hament: 25:38

I have to tell you, working with your mom, and I mean, we're kind of jumping way ahead here. Your mom is out here in Los Angeles. She's at an assisted living. That's when I entered the scene, and the phone calls to you. Her face lights up. She has a look on her. There's no distance between you when you guys are on the phone.

Elena Berg: 26:00

Yeah, yeah, and that the and that connection hasn't changed at all. I mean, not at all. Like the

Barbara Hament: 26:07

you could be next door and you could be in Paris. It doesn't matter.

Elena Berg: 26:10

Yeah, I mean, and I know that is also a stage of dementia, but so far that hasn't changed between us. Like I don't. She still is totally recognizably herself.

Barbara Hament: 26:21

Ah,

Elena Berg: 26:22

just she's exactly who she is, and so I don't see her as somebody who. I mean, I I do feel like I have gone through some already some stages of grieving, and you know, I have kind of said goodbye to part of who she is, but she's she's still that person, yes, and so I think that's the the advice. I guess that was part of the sort of thinking through your notes. Like the advice I would give is just, you know, meet them where they are and appreciate the person that's still in there. And rather than bemoaning the parts of them that are missing, we can't do anything about that. It's not like they're gonna get better, exactly, exactly. That's a hard thing to ask, and it's not something that everybody can give. You know, like some for some people, it's too much. It's too much, and I I notice this a little bit with her friends. So she has these very close friends, but a lot of them are aging as well, and some of them have you know big health problems, and but it was really hard for them. Some of them to navigate mom's diagnosis. I had a couple of conversations where I ended up being the one who's like, "It's okay," you know. I'm like, "Wait, wait, wait. Why am I giving counsel to like like I'm I'm the daughter? You know,

Barbara Hament: 27:39

right? They should be getting counsel to you. Yes, I

Elena Berg: 27:42

know, but at the same time, like everybody handles grief in different ways, and

Barbara Hament: 27:47

for

Elena Berg: 27:47

some people, like I think for my oldest brother, it's really hard for him to be around mom, and he just he just doesn't really. I don't think he gets much out of that engagement, and he's really happy that Alec and I do it, but he, you know, he he's not he's he doesn't you know he's not very present physically with her. Like he doesn't, you know, he I think he makes his efforts in various ways, but it's really clear that for him, mom isn't really there anymore.

Barbara Hament: 28:18

He's gotten to that already, and he's and he's doing what he can, and he's not entirely wrong, right? And he's doing ads. He killing.

Unknown: 28:25

Okay, exactly. Else, doing it the

Elena Berg: 28:27

duties.

Barbara Hament: 28:28

Exactly, paying the bills is a huge responsibility. He does it well, and that's exactly what a care manager, someone in my position, we would say: use everyone in their family for their strengths, and that's his strengths. So you have pulled him in. He's geographical. He's not in LA, so he can't. This is something he can do, and he does it well. Great. Yeah,

Elena Berg: 28:48

yeah. Does it well? And you know he's pragmatic, so he does raise alarm bells when he's like, I don't understand this. This this number and this number don't match up, and you know, so he's good at that. Like he's not just sort of paying the bills and not paying attention and and shutting off. He's he's quite actively managing,

Barbara Hament: 29:08

right? He's questioning, he's overseeing, and he's looking, which you need because guess what? Growing older in LA, it's so as you know, it's so expensive.

Unknown: 29:18

Yeah,

Barbara Hament: 29:19

yeah,

Elena Berg: 29:20

you know, and this is you know there are so many layers to this onion because I'm also you know I live in France. I'm in a socialized medicine sort of world where I have a lot of security. It may not be the best care I'm always going to get, but I have this security that if I need help, I'll get help. And in fact, I've had a number of medical sort of emergency medical needs when chronic medical needs, and it you know I think that would have made me much more anxious in the U.S. because I don't have a lucrative job. I mean I am we're doing fine, but I like you know it's just just a teacher, right? So I do love. Living in a place where like this has been a priority for people to invest in a shared structure of support, and so it is really hard for me sometimes when I see the bills for mom, and I'm very very grateful that I can just send you know not look at those and have Henry deal with it because I'm like, oh my god, right? That's like three times my salary, and you know, I just panic. Yeah, there's no way a European salary or European, you know, someone in my position could ever pay any of the amounts that that were that are on the table.

Barbara Hament: 30:36

Exactly, and

Elena Berg: 30:36

it's profoundly unfair to me. Like we were given a gift, which is you know, gifts slash years of mom not having a lot because dad was controlling about the money, right? Like years of that, and now we have this ability to take care of her

Barbara Hament: 30:54

in a really nice way. In a really nice way, you guys chose a great facility. Yes.

Elena Berg: 30:59

So what what makes me just desperately sad is thinking about the vast majority of people who don't have the resources to give their loved ones the best care.

Barbara Hament: 31:11

I've always suggested to the place where she's at that they have one room that is free. They open it up to someone who can afford it, but I don't think they've. I don't think they've taken my suggestion.

Elena Berg: 31:24

I mean, exactly. But that's the same spirit that I'm talking of. This, like, yeah, and there are all sorts of philosophies about that. And you know, this doesn't need to be a

Barbara Hament: 31:35

political

Elena Berg: 31:36

about you know medical care. But my feeling is that we aren't all dealt the same cards. It's not like we're all on the same playing field, and may the may the best person win and earn the most money, right? We are all dealt very different kinds of cards, and we were fortunate to to have very good ones in the end. And mom has no idea what any of this costs, and that's exactly as it should be, right? She no idea. And your

Barbara Hament: 32:05

mom, I have to say, her demeanor. When I've gone over to her assisted living, she's in this special program for people with memory loss, and she participates happily in all the activities. It's remarkable.

Unknown: 32:19

Yeah, it

Barbara Hament: 32:19

really has up until recently, right, and we can get up to recently if you want. But through just these past few years, she, I go there, I can't find her because I never know where her group is going to be, and she's never in her room resting.

Elena Berg: 32:35

No, no, and in fact,

Barbara Hament: 32:36

this is one

Elena Berg: 32:37

of the frustrations ahead. So I, you know, I just in my moment of kind of vulnerability, is like how much I miss her. Well, I thought, oh, I'll just call her, you know. And because my mom can't, she's never been able to manage a cell phone, even when her brain was relatively well. She's always been a technophobe. It's always been really like it took forever for her to transition from a typewriter to a peer, and then she finally did, but she did it really incompletely. Like mom never really understood. You know, she'd be like touching the computer screen. It's like she didn't get the concept. It just was not. And so that wasn't about her dementia. That's just how she was built. So she, I can't. I could never text her, even when she was well, because there's no way in the world she would ever. I mean, she would get the cell phone and and it would stress her out and and she'd put it away. My dad had one, but he was so stressed out about like how much is this phone call going to cost? Or oh my god, what if you know I have to keep it plugged in so that the memory you know it always has 100 battery that he never used the device. He said the same thing when he had an iPad that someone had given to him as this like really nice gift, and he just like you know he didn't want to go near it. And so it was we're like, oh yeah, we'll get her a landline in her you know Westwood new home. We'll get her a landline, but I could never reach her.

Barbara Hament: 33:59

Right,

Elena Berg: 34:00

and very quickly, she lost the ability to really understand how to use an answer. We had like the old style answering machine, and she couldn't really figure that out either. So I would leave I don't know how many messages, and they all said the same thing, like"Hi, mom," you know. And sometimes I would give her a summary of what we were doing, but then I would come visit every three months, which is

Barbara Hament: 34:22

amazing that you been able to do that. That's unbelievable.

Elena Berg: 34:26

Fair moment again, thanks to support from the estate, right? That helps cover those costs. I couldn't afford that, and all of my messages would be on her answering machine, and she would have had no idea that I'd ever called, and I'd be like, "Oh my god!" And my kids would giggle as I would play the messages. Hi, mom. You know, so it's like it's humorous, but it was also like,"Oh." So I stopped my motivation to keep trying. I was like, "I'm going to call her every day," and it's just really hard. First of all, it's. Hard when no one picks up the phone, but it's also hard when you have to have the same conversation every day.

Barbara Hament: 35:06

And had you reached her, you would have, as you know,

Unknown: 35:08

yeah,

Barbara Hament: 35:09

we've experienced that. You have the same conversation with her

Elena Berg: 35:11

every time.

Barbara Hament: 35:12

Every and

Elena Berg: 35:12

you, you know, Alec and I, you know, we in our family, and you know, he's a comedian, you know, comedy writer. It's like we have to find ways to laugh, right? We

Barbara Hament: 35:23

have to,

Elena Berg: 35:23

and actually, my kids have picked that up too. So little things like Alec and I joke about how, like, she'll say, "Oh, how you know? How's your your work?" and you'll give this long, enthusiastic explanation, and then she'll ask two minutes later, and you're like, you know, slightly less enthusiastic explanation, and by like the fifth time, you're like, "I'm fine," and you, you know, and you have to laugh because it's like, okay, a lot more to say, but I just cannot bring myself to say it all again, and again, and again. The kids always laugh because mom would always, always want them to have a glass of water. Would you like a glass of water? No, thank you. Would you like a glass of water? No, thank you. And so it became a family joke, right? And they would just like, and mom didn't understand what they were laughing about, but she also wasn't offended, right? And she had a sense of interesting, like you know, ability to understand the impact her disease might have on other people. I remember asking her once, like, "God, is it? It must be hard for you, you know, not remembering stuff." She's like,"I don't remember what I don't remember. I mean, I'm not the one suffering. It's other people." She would say that. Oh my God! She's like, "Doesn't bother me because I don't remember what I don't remember, right? Right. So she was also able to be like, yeah, you know, this is how it is. Yeah. Yeah. So she she's been doing well, I think, in for the most part. You know, she was a very skinny, kind of unhappy person, and I think she, you know, she gained weight. Now that's an issue, right? Maybe it's too much weight, but she started. You know, she had rosier cheeks. She seemed, you know, every time I would ask her, "How are you doing, mom?" She's like, "Oh, I'm having a wonderful time." And maybe that part of that is that mom always did that, even when she was miserable and fine, right? But it was unprompted. She's like, "Oh, the people here so nice, you know. Like she just so I don't think that was all a reflex. I think, I think she had a pretty good time.

Barbara Hament: 37:30

But from what the staff always said, that she seemed happy, content.

Elena Berg: 37:35

Yeah,

Barbara Hament: 37:35

yeah.

Elena Berg: 37:36

You know, it was interesting going every three months because I would notice there was always something that was different,

Barbara Hament: 37:41

but

Elena Berg: 37:42

surprisingly little. Actually, I thought it was going to be like you know some deep descent, but in fact, she was pretty stable for a long time for

Barbara Hament: 37:51

several years until interesting. Well, what you know the big crisis that came up with first your dad dying, but then she broke her hip. Well, here again, yeah, she fell and broke her hip.

Elena Berg: 38:01

But that's what's so weird is that she broke her hip in. See, again, I'm going to scramble all the dates. I used to be better at the dates, but so yeah, Dad dying this was a combination of like that was a trauma that like definitely impacted her mental health, probably on the heels of COVID and isolation. But it was also for us, my brothers and I, an opportunity to really see what was happening, and it had been going on. It it was not new, right? We were just privy to it in a new way.

Barbara Hament: 38:27

Well, and then right, she comes out here. Well, so then she falls, right? But

Elena Berg: 38:31

then she falls, and we thought, and everyone was like, "Barm beginning," you know, like everybody gave us that. Like, I hate to break it to you, but this is, you know fall apart. It's

Barbara Hament: 38:42

a game changer, yeah.

Elena Berg: 38:44

And it wasn't like mom just kind of got up and fine. Like she really healed fast. She just was like up on her feet, ready to go. So we didn't. You never know when you know. Like the whole notion of like oh a hip breaking a hip is a you know is a sort of a death sentence. It's like not necessarily. And mom is very resilient, and that's why when she fell and broke her HIPAA again this time around, so whatever it was, that was actually right after a visit in February. So it would have been what March or

Barbara Hament: 39:16

something, right?

Elena Berg: 39:18

So she was absolutely fine. I'm kind of glad we had that visit because we went in February and she was just fine. Again, little things that I noticed that were, you know, getting worse. Like she she used to love using her calendar on her desk, and she liked to check her email. You know, these sort of things that she you realize, oh wow, she has not opened her computer in months. She's written, you know, I used to know look at what she would write in those calendars because I was the one who would like buy them every year, put them there, and she used to write down all the movies she would go to, and you know, she would write stuff down to kind of remind herself about what she was doing, and that you know, by the end, she wasn't writing anything. So it's. Like breaking her hip this time was like kaboom. I mean, yeah, there

Barbara Hament: 40:05

was accumulation. Yeah,

Elena Berg: 40:07

but she didn't get up, right? She she didn't get up this

Barbara Hament: 40:12

this time now.

Elena Berg: 40:13

And we visited in April, and she was sort of functioning pretty well. She liked her rehab. She didn't seem to be particularly lonely for Belmont. She was like, "Why can't I just stay here?" I mean, and she was very lucky. They, the people, they were really nice. She was. She has some really just. There were nice people who were in the in rehab at that time. There was this really

Unknown: 40:37

funny

Elena Berg: 40:38

old gentleman who was, you know, cracking jokes, and it just seemed like a good place in that moment. At least

Barbara Hament: 40:46

she felt taken care of.

Elena Berg: 40:47

Yeah, yeah. Even though she wasn't able to walk, and so I, what I suspect is that was sort of still early days. She just broken her hip. She's in rehab, and you know, in the last few months, she's been wheelchair bound, and this is the real. And she moved again, right? We had we moved her to that step up and care,

Barbara Hament: 41:08

step up and care, and closer to your brother. So yeah, yeah, yeah,

Elena Berg: 41:13

which is good,

Barbara Hament: 41:14

a good thing, a really good thing. Yeah,

Elena Berg: 41:16

yeah, and you know, we thought a place that had more more light and had nice people for that level of care,

Barbara Hament: 41:23

right? So now she's in memory care, just different story.

Elena Berg: 41:28

Yeah,

Barbara Hament: 41:29

yeah,

Elena Berg: 41:30

yeah. And

Barbara Hament: 41:30

just adjusting to it, they're just getting to know her, right? This was a pretty recent. What are we in August? So yeah, this is a recent change.

Elena Berg: 41:40

Yeah, it's a recent change, and and then so what we're dealing with right in this moment is the perfect storm because and you know I'm a scientist, evolutionary biologist. You know I think grand scale about how we evolve, and that helps me a lot. Actually, it helps me work through difficult stuff because I can somehow put it in a bigger perspective. It's a bit like stargazing, right? Oh, I'm just the speck on the, you know, it's the same kind of space and time, right? When you can kind of realize, oh gosh, it's not all about me in this moment. It's it's easier. If I were to do an experiment, I certainly wouldn't have someone fall down, break their hip, move them to a new place, have them get a UTI, and then try to figure out how dementia progresses, right? Like that's a terrible experiment. You've thrown everything, you know, except the kitchen sink, at this person who knows what causes

Barbara Hament: 42:33

what. Right? Is

Elena Berg: 42:35

it the break? In fact, she's not walking. Is it the fact that she's in a new space? Is it the fact that she's you know with new people. Is it is it that she just got sent to the ER twice? Yeah. So it doesn't seem like she's doing well. So that's that's a hard part of this too is figuring out like how do you contend with the next steps? How do you know the right time to decide things? Like even deciding to move her out of the Westwood facility to the Encino one, like

Barbara Hament: 43:03

it's really

Elena Berg: 43:03

hard to make that decision and to make that call. Like, should we rip her out of her home,

Barbara Hament: 43:08

where she knows everyone? Everyone knows her. She's loved over there. Yeah, that's that was a hard decision,

Elena Berg: 43:15

but it seemed like the right one. Like they did the homework, right? Like, and that and actually the push, I was definitely part of the motivation to like check out Encino because part of it was like all the bells and whistles that were available in Westwood that mom just wasn't needing as much anymore. And if we're going to do this over the long term, I mean, we don't know how long all this is going to last. Like, do we really need her to be in a place where everything is five times more expensive because they have five times as many things,

Barbara Hament: 43:44

right? Which she's not engaging in, yeah. And

Elena Berg: 43:48

Alec wasn't able to visit her as regularly as he might have because that's kind of a frustrating commute for

Barbara Hament: 43:54

him. Yes, yes, I definitely supported your decision. Yeah, I'm sure. But so then I was

Elena Berg: 44:01

like, "Well, what about the you know?" Then they were like, "Well," and they also didn't love the floor in the Westwood facility, and not you know not because there's anything wrong with the facility, but just like didn't have the right. They weren't feeling it. So I'm very glad they pushed to do that. I mean,

Barbara Hament: 44:16

and memory pairs a different vibe, right? A whole different vibe. You're seeing people more progressed. It's hard to see. It's hard to see. Yeah,

Elena Berg: 44:24

yeah.

Barbara Hament: 44:25

One really wants to see like where this is going. Yes.

Elena Berg: 44:28

Yeah. Well, it's just, and it's profoundly sad. I mean, we have. This also makes us one of the hard things about all this, and I think probably for all the families that are dealing with it, is that you see your own progression, right? You're like, oh my God, is this going to be me?

Barbara Hament: 44:42

Right, and there are times mortality. Yeah. Oh yeah,

Elena Berg: 44:44

and I can't imagine in the job that you do that you don't sometimes imagine yourself. Like it's like, how could you not? Right? How could you

Barbara Hament: 44:51

not? Of course, absolutely.

Elena Berg: 44:53

And that I feel like I'm, you know, 80, and I have to be like, no, not like

Barbara Hament: 44:58

reorient yourself. Yes. I would say I've worked with a lot of families. Your family, in particular, very reasonable, rational. You look at you're very mindful. You take things into consideration, and I think that comes, you know, from your folks, right? Like you don't do things impetuously. Things are thought out, thought through, and that you know. I remember meeting your brother for the first time, and I remember him saying, "My parents sat down, or maybe it was you. Maybe I spoke to you one time, and they're like, they definitely do not want heroic measures. That's who they are. Like they talk this through. They have never wanted that, right?

Elena Berg: 45:41

But they don't want what they don't want

Barbara Hament: 45:43

heroic measures. Like they do not want to be kept alive. Like that is, you know, they don't want to be on feeding tubes. They don't, you know, artificial nutrition. No, that's never what my folks wanted, which is really pretty progressive for right for your parents to like make these decisions way before. Well, who knew about? You know what's funny

Elena Berg: 46:06

is I never remember. I don't remember. Maybe my brothers did. I don't remember ever having a conversation about my with my parents about what they would want.

Barbara Hament: 46:13

Someone did because I remember someone saying that. It must have been your brother. Could have been.

Elena Berg: 46:18

Yeah, it could have been that. But that I think part of it is also just that we know we're all we're on the same page about like who mom and dad were, you know, and obviously mom still is. But like I think we've had we've had some bad moments for sure, but like we've never disagreed ultimately about like what mom and dad would have wanted. We didn't have much time to have to deal with that with dad because he had such an aggressive form of lymphoma that it was really it was three weeks you know it was right it's so quick there was a moment when we were trying to say like oh should we bring him home to die should he die in hospital you know but it was like it all happened so fast and with mom you know there's more potential for conflict but there hasn't been much I mean, there have been moments when I've gotten freaked out about the money. Not like we can't do this, but like you know, where I sometimes make that mistake of comparing that money with my money, right? Like it's it's we're in a different world. Sometimes you know Henry gets upset because it's dealing with the lawyers and like it's organizing all the paperwork and he he always gets really stressed out doing the taxes. Yeah, I'm sure. You know, Alec, it's hard, really hard for Alec, obviously, to watch mom suffer in the hospital. But as I said, be here. Yeah,

Barbara Hament: 47:41

yeah, it was hard. Like she was so afraid to stand up after that fall. She's she kept she thought she was going to fall. She was so nervous about standing up, and doesn't surprise me that she's really mostly in her wheelchair. That she, you know, this second fall, really.

Elena Berg: 47:58

Yeah, and it's so interesting. I wouldn't have necessarily predicted that because of how she sprung up. She didn't even last time around. Time she's like, "Well, it's time to go. Got to go, right?" She just she just did it. She didn't even think twice, and that's kind of mom typical mom. She's again doesn't advocate for herself. She just kind of, and that's why you know when she gets UTIs that shut her down. She, you know, she had a UTI that went systemic. She, you know, she nearly died when she was she came to see me when my son was born

Barbara Hament: 48:30

years ago.

Elena Berg: 48:31

Yeah, and it was so it was interesting, and it was a similar kind of instant personality shift. She just became someone else, and I was completely

Barbara Hament: 48:39

freaked

Elena Berg: 48:39

out. And everyone was like, "Oh, you're just hormonal because you just had a baby. I'm like mom, something's wrong with mom, and it's so it's interesting. You're right. Yeah, she that's how she just like she doesn't feel pain. But even if she did, she probably wouldn't say much. But it's the fact that she's so afraid means like maybe she doesn't understand pain in the same way she did before. You know maybe she's afraid because she doesn't have that kind of mind over matter way of interacting with it anymore. She doesn't understand it, so she's scared of it. I mean, we're always things are always more painful when we are scared, or if we don't know why why we feel that pain. Fear amplifies all of that, and I think when you have dementia. I mean,

Barbara Hament: 49:21

yeah, the

Elena Berg: 49:22

world is a scary place. You don't understand what's going on. Yeah,

Barbara Hament: 49:25

that's exactly right.

Elena Berg: 49:26

I can't imagine.

Barbara Hament: 49:28

Right,

Elena Berg: 49:29

and this is, I guess, I don't know if this is relevant or we have time for it, but this is what prompted you know this last visit that Wendy was really very, you know, proactive about kind of keeping mom from being admitted into the hospital, and really was her advocate in that moment, and was talking to Michelle about, well, my sister-in-law, there there are ways we can manage this without you know the the obligation that a assisted care facility has to call the paramedics that they have to. It's part of the insurance. It's just they they can't not do that if their if their person living in their facility isn't responsive or there seems to be an emergency. They don't have a choice. But what I didn't understand, which is maybe a really important learning moment for me, well, there's two things I learned from this now move to a hospice kind of response team. One is that I did not know how far mom had declined. I did not understand that, and sometimes it's you really need someone else to tell you that, right? Like I'm sure it must be hard in your position to be like, actually, let me tell you what's going on with your loved one. Like I, I'm guessing you might get pushback for something. Well, I know my loved one, right? Like, but

Barbara Hament: 50:43

I

Elena Berg: 50:43

sometimes we have to be told, like, you know what? And it it was her telling me, you know, on a scale of one to seven, your mom is like a six or a seven, you know, with her dementia. Like, this is a really, you know, this progresses very far. Like, this is this is no no longer a person who's sort of functional. Yeah, I must

Barbara Hament: 51:02

say, I was surprised when I went to see her at her new place. She was sitting at the dining room table, eyes closed, head down, and they were feeding her, which she had never needed to be fed before this. And so, I said,"Yeah," I said to Wendy, "This is not Mary's. You know,

Elena Berg: 51:21

yeah.

Barbara Hament: 51:21

Either she's really progressed in her dementia, or this is maybe another UTI, or something's going on.

Elena Berg: 51:28

Well, what what I learned from with her help, and you know, asking lots of questions and talking to my sister Lawn, you know, basically again, my role kicked in because I'm like, okay, I'm the emotional caretaker, right? I have to. It's like mom isn't. This isn't what mom needs, right? She doesn't need to go to the hospital all the time. Like this isn't. And also, she's 86. She's with 00 notion in our minds that she'll get better, right? Like the there, nobody is deluding themselves here. Like this is not like, and and that what helped me a ton was understanding that hospice isn't what it was for my dad, which was the last day of his life. Take the tubes out and wait for him to die. That's yes, that's also hospice, but like that it is a network of caretakers who come to the person to give them comfort and dignity and calm and all the things that we all hope to have, and there's no timeline, right? Like, so I've also found that incredibly comforting, and actually, rather than being kind of horrifying and like this marks the end, I'm like, well, I don't know what it marks, but it certainly is going to give mom what she needs. Exactly. It's not like, oh, well, if she has an infection, we don't treat it. It's it's like a it's a different level of mindfulness of someone's comfort that the medical system does isn't designed to do. Like the the kind of standard ER system is not designed to work with people who are in end stages of their lives. It's designed to bring people back to health, which is not something that can be done when you're 86 with Alzheimer's.

Barbara Hament: 53:13

Right, that's right, exactly.

Elena Berg: 53:16

So I think that's where we are now, right? Which is who knows? Maybe the UTI will clear up, and maybe mom will get used to Encino, and maybe she'll spring back a little, right? A

Barbara Hament: 53:26

little, hopefully. But even if she springs

Elena Berg: 53:29

back a little, hospice is still the right move for her because she still doesn't need to go to an ER

Barbara Hament: 53:34

for a UTI. Certainly, no,

Elena Berg: 53:37

not at not when those faces are so bewildering. That's not going to change, right? She's been bewildered by hospital spaces every time in the last few years that she's had to go,

Barbara Hament: 53:48

right? And the beauty is, she can always go off hospice if she falls and breaks her wrist, right? Then she does go to the ER, yeah, goes off hospice and gets that mended, of course.

Elena Berg: 53:59

Yeah,

Barbara Hament: 54:00

yeah,

Elena Berg: 54:00

yeah, yeah, yeah. So I, I feel like it's the right. It's oh, I mean, but then you're. It's always this. You know, Alec and I had this whole long conversation. Where is the needle? Like, when do you do these things? And you know, and I think it was very helpful for us to have a kind of a long conversation with you know the the hospice agency to to understand like, oh, this is a collaborative process, not a, you know, you said that you want a hospice, so this is the way it has to be. I mean, just feels like it's just an extra layer of support,

Barbara Hament: 54:30

right? Exactly, in her home, right here. She is, yeah, yeah.

Elena Berg: 54:34

Which I hope will feel a little bit like home with some time, but I hope

Barbara Hament: 54:39

so too. Yeah, bring some pictures. Some bring some new pictures of you guys.

Elena Berg: 54:44

I know, and that's always hard too because, like, when I send letters, I don't ever get any sense that she's ever seen them or read them. And

Barbara Hament: 54:51

but she has shelving, so you can put new pictures of your family.

Elena Berg: 54:55

Yeah, I wish I had a sense that like she she interacted with those things. More, but you know how to. I don't

Barbara Hament: 55:01

know, but you know, but maybe the staff points them out to her.

Elena Berg: 55:05

Yeah. Well, I I sent a link to the I you know I've been talking with my sister in law about because she's really empathetic and worries about my mom too, and is you know Alec is he's not the kind of person who like sit on her bedside and read her story. You know, it's just not who

Barbara Hament: 55:22

he is.

Elena Berg: 55:23

We are very stoic Scandinavian family in a lot of ways. My dad was from a Swedish enclave and grew up in you know the Midwest and Iowa. Very hardy people. My mom has always been a bit dreamy and also very stoic in her own way. And so, like God, we're just a bunch of Swedes. You know, it's so funny. I lived in Sweden for four years, and I just I saw my family everywhere. Like not only in the way they were behaving, but it's it runs really deep. So, being able, you know, I'm kind of I've trained myself. I had to train myself quite for years to be the the emotionally very open and chatty

Barbara Hament: 56:03

one.

Elena Berg: 56:04

Learn it at home, and that's my role, right? So yeah, it's your role.

Barbara Hament: 56:09

My mother-in-law had a magnet on her fridge, sort of the same region. She said,"You can always tell the Dane, but you can't tell him much."

Elena Berg: 56:16

Yeah, that's so true. But I actually, you know, it's I. It's funny. I could be the chatty, emotional one, but I also deeply appreciate some of that stoicism. Like,

Barbara Hament: 56:26

it comes in handy for sure.

Elena Berg: 56:28

Well, and like I said, Alec is he's a rock,

Barbara Hament: 56:31

exactly that rock. He's a rock star. I mean, really, he's amazing. So he's amazing. Yeah,

Elena Berg: 56:36

yeah. And then, but so he, you think, okay, well, he just doesn't say much. But no, no, no. When like I, one of the things, another silver lining I would say is that like it's certainly I really love that I get to see him every you know, and that my kids get to see him and see you know Michelle and their daughter and you know like we we it's really great because otherwise our lives are so different.

Barbara Hament: 57:00

Yeah, so far apart. So far apart,

Elena Berg: 57:03

you know, Alec always has like 16 projects. He's always, you know, and

Barbara Hament: 57:07

super busy. Yeah, everyone's busy in their lives. Yes. Yeah.

Elena Berg: 57:11

And sometimes we look at each other like we are from different planets because we live such different kinds of lives. But that's. I feel like we're on the same team, and that's that's been really really great.

Barbara Hament: 57:22

Yeah, you are you're on Team Mary, and it's it's great. And we have

Elena Berg: 57:25

a sense of humor. Like Alec, Alec helps me when I get when I feel anxious about stuff. Like see the I don't know, like be able to laugh, which I think even in the direst moments is so important.

Barbara Hament: 57:39

Absolutely. Yeah. So

Elena Berg: 57:41

that that would be my other advice: is like make sure you keep your sense of humor because you know we all die. We don't always get to choose how.

Barbara Hament: 57:50

Exactly. Yes.

Elena Berg: 57:52

My mom has a even when you know she has sense of humor still when

Barbara Hament: 57:56

she's

Elena Berg: 57:56

in her good moments about like well we'll see what the next chapter brings. Like I don't know what I'm gonna do with my life, but you know I'm like I like that attitude that she's still trying to figure out what she's gonna do with her life. Yeah, and I guess the last thing I'll say I know I've been talking a lot, but one of the last things I'll say about like mistakes that I made early on, I decided that I was gonna help mom organize her own brain, and when she was living in Boston, there were a few things that were traps. One was being kind of isolated from people, living on her own, and and with a place full of memories of the past, which is good and bad, right? Like it's memories, but it was not. It was it was hard, and with her grief, but she also printed 70,000 things a day. She would just print, and then she would print it again and print it again. And she had these piles of just printed things. They were, you know, maybe obituary notices about my dad, or like an article that someone had sent her, or. And so, one nice thing has been sort of taking her out of some of that, so she didn't have that anymore, and she didn't miss it. You know, it's not like she it was,

Barbara Hament: 59:08

and she didn't miss it. No, no. So that's such an important point. She didn't miss it. People also people think, oh, I can't take my mom from all this stuff. That's her. Like, that's all she knows that orients her, but no,

Elena Berg: 59:23

no, and you know, okay, and it's kind of my fault that she has as much stuff as she has because I'm like, oh, she'll want to have you know this.

Barbara Hament: 59:31

She doesn't have that much stuff. You think she has a lot of stuff? She doesn't have much stuff. She does not have a lot of stuff. Do not. Oh my goodness.

Elena Berg: 59:40

So I think I'm just I'm very like self conscious about how emotionally attached I get to things that have histories and stories and yeah she has just

Barbara Hament: 59:49

the right amount of stuff you yeah like

Elena Berg: 59:51

couldn't bear to you know so I was like exhale about that one attacking her or like deciding what would go to the west coast and it was. Considerably more than I think my brothers would have packed for her, but I was like, "But this was her mother's, you know, and it socks, right? It wasn't important items, but they felt so. That was it was good for me also to see, like, okay, she doesn't need that printer; it's just there, and so she uses it and use, and she doesn't need the 5000, you know, Q-tips or paper towel rolls or you know like plastic bags or you know she just kept saving everything. But I tried early on to organize her brain for her, being like,"Mom, here's your notebook. This has all the emergency numbers. This is what you do, you know. And I like I put so much time into trying to like

Barbara Hament: 1:00:45

organize her world,

Elena Berg: 1:00:46

organize her so she could move

Barbara Hament: 1:00:48

around, and she

Elena Berg: 1:00:49

just never opened that book. So that would that was a mistake I made was to try to impose a system on a brain that couldn't accept the system. Another mistake I made early, which I totally forgive myself for, is I would get frustrated with her.

Barbara Hament: 1:01:04

Very common.

Elena Berg: 1:01:06

I don't know, Mom. I told you that,

Barbara Hament: 1:01:08

right?

Elena Berg: 1:01:08

You know, or like, ah, I, you know, really again, or no, you're not supposed to. That's not the button. You know, it's on the wall. You push this button. You know, like

Barbara Hament: 1:01:20

yes, impatience. Everyone's impatient. It's so hard not to be.

Elena Berg: 1:01:26

Yeah, but that went away completely. Like that was, I had impatience at the beginning, and it also ate away at me. I just hated it. I hated feeling that way. And I, when she moved west, I completely let it go. And I just never. There were moments, so it's interesting. Completely, maybe not. Like I had a limit of the amount of time I could spend around mom before I had to. I had to go, so that was why it was really lovely to be in a hotel where we could walk.

Barbara Hament: 1:01:56

And then you could go leave and go for the night and be by yourself.

Elena Berg: 1:01:59

Yeah, I would be like, okay, it's been half an hour, you know. And and Alex' time limit is even shorter. Like he would be like, okay, it's five minutes. You know, I'm done because he didn't want to explain the same thing 1000 times. And I would do it because I'm like, well, this is my week, so we'll come back for lunch. You know, like so we would see her multiple times a day. Yeah, and and small doses. Yeah, because otherwise I would start to go a little crazy, and then my my kids would always be like,"Yeah, you start getting a little bit agitated." You know, be like, they always like, you know, they always know how I'm feeling. They're like pointed out. I'm like, yes, but they help buffer. You know, they help me a ton because they're just they're funny and you know genuine, and they're very gentle and kind.

Barbara Hament: 1:02:46

Yeah, and they distract from her. I'm sure.

Elena Berg: 1:02:50

Yeah, even when they're being kind of, you know, I remember once going over to Westwood, and Oliver decided just he was done. He wanted to go home, and it was probably precip. I told him not to pick out that library book, or I don't know what, but okay, I'm leaving, and he did, and he went all the way back to the hotel. Not a big deal. It's like it's well, it's like eight bucks.

Barbara Hament: 1:03:10

I mean,

Elena Berg: 1:03:10

and he was at the time I don't know 10. He's

Barbara Hament: 1:03:13

fine,

Elena Berg: 1:03:14

but yet I was like, how did you left? You know, how did you do that? So there were these little dramas where I'm like looking all over the entire facility for my wayward son, who decided he was done. You know, so there were. It wasn't always easier having the kids there, but I think, and it's good for them. They they're also witnessing what it's like to you know go kids like this.

Unknown: 1:03:41

Yes, to see their

Elena Berg: 1:03:43

grandmother, I'm not sure all those lessons are good ones, but

Barbara Hament: 1:03:46

I think so. I think so. I don't

Unknown: 1:03:48

know,

Barbara Hament: 1:03:49

right? They're being exposed to dementia. What could happen? Who knows, right? Down the road with any one of us, what could be bad? They're seeing her for who she is, what she has. She's still the most loving. She's still so kind and right. I'm sure her face lights up when she sees your voice, Elena. Thank you so much for being here today. I so appreciate you and your family. I I feel blessed to have the opportunity really to work with your family and your mom, who's just lovely, and and I was sad to see her move to a different part of town. I'm happy my colleague gets to, you know, take it from here. But I must say, I was I was sad saying goodbye to your mom, and so I'm happy that we have this time together now. I get to see you and and speak to you, which is just wonderful, and I'm always here for you. You know that, so just a WhatsApp text away.

Elena Berg: 1:04:48

Yay! I love that. Thank you so much for taking such good care of her. That was like, that was such a such a comfort that I hadn't anticipated and and would never have like set up myself right for all the reasons that I. Explained, I would have done it myself. Sure, of course. But how wonderful to have have a caring person who also has experience working with with people who are going through this, you know, similar things to be to be there for her. Like I'm sure you did a much gentler job of a lot of it than I could ever have done because you know I would have I would have done it, but I think the fact that this is you know what you've trained to do it's a gift really that you're giving families you know to have fun their their love for their loved one without having to navigate some of the harder stuff. So thank you for that.

Barbara Hament: 1:05:40

Absolutely, wholeheartedly done it lovingly. I I just love your family. So love your mom, love your family. 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 dementiadiscussions.net forward slash contact and let me know. I would love to have you. Remember that you can follow Dementia Discussions on Apple Podcasts, Spotify, Google Podcasts, and many more. If you listen on Apple Podcasts, it would mean a lot if you would leave me a review. For any other information about this podcast, please visit me@dementiadiscussions.net, 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.