Episode Transcript
[00:00:02] Speaker A: Come to the cabaret and sing.
[00:00:15] Speaker B: So.
[00:00:16] Speaker C: She has an audience.
[00:00:20] Speaker B: That was our mom, Joanna.
[00:00:22] Speaker C: Hold on, hold on. Are you sure you press record?
[00:00:25] Speaker B: Yes, I'm sure.
[00:00:29] Speaker C: Positive? Positive. Because we've had a couple errors.
[00:00:32] Speaker B: Yeah, no, we figured it out. I'm 100 sure. We are definitely recording. As you guys can tell, this is not a professionally produced podcast, but just a couple kids talking. We wanted to let you know that was our mom, Joanna, playing piano and singing in the home she's lived in for over 50 years. She has dementia, but she's still able to experience many joys in life, including her music. Still, navigating her care can be frustrating and heartbreaking. Causes a lot of anxiety at times. With a million things to figure out. And once we think we've got a handle on it, something else pops up that we have to identify, research, and solve. We recognize from our own experience that this can be overwhelming. So we created this podcast to share our stories, hear from experts, and build a community where listeners can do the same.
Because as we've learned, if it's not one thing, it's our mother, Joanna.
[00:01:28] Speaker C: But it could be your mother or your father, your grandparent, aunt, uncle, friend. Yeah, anyone that you are providing care for.
[00:01:37] Speaker B: Indeed.
[00:01:38] Speaker A: Indeed.
Indeed.
[00:01:42] Speaker B: You can cut the indeed if you.
[00:01:43] Speaker A: Want to, but I kind of like the indeed.
[00:01:45] Speaker C: It's intriguing.
We know that there are so many people who are trying to care for aging loved ones, and the numbers are striking. There's a major care gap in this country that is growing exponentially. According to AARP and the national alliance for Caregiving, the demand for long term services and support is expected to double by 2040, while the supply is not keeping pace. By 2034, adults over 65 will outnumber children under 18 for the first time in US history.
[00:02:19] Speaker B: That is daunting to consider, but we can put a dent in that gap by addressing our issues one family at a time. We hope sharing our stories and talking with experts in the field is a valuable step.
We're here to help families deliver the best care for aging loved ones. So let's go.
[00:02:39] Speaker C: Okay, so first we're going to introduce ourselves. My name is Karen Edelson. I am the middle of the Eddle children. I just retired from teaching middle school for 30 years, and I now have a tutor business.
I live near my parents, so I've basically been the primary caregiver for both of them. First my father, who passed away in 2011, and then over the course of the last several years, my mother.
So I've really been at the helm of so much of what's been going on in that household for a really long time.
We also have a sister, Julie Halpert. She's our oldest sibling. She will be joining us throughout the podcast. She's a journalist who has for decades written for the likes of New York Times, Wall Street Journal and the aarp, where she's reported extensively on aging, so she will have a lot to share.
[00:03:30] Speaker B: I'm Andrew Edelson, the younger brother. Karen and Julie are five and seven years older, respectively, and despite the age gap, we've remained close over the years and grown closer through our shared experience caring for mom together. Over the past five years especially, I lived most of my life away from the Detroit area where we grew up. I lived in LA, Chicago and 13 years in Asia, mainly in China working in film and tv. So I have been away from much of this until I came back to the US a few years ago when I became intimately involved in mom's care with my sisters. Through that experience, I've learned a lot about the challenging world, especially when it comes to finding the right care for an aging loved one.
And now I've come all the way back from halfway across the earth to where it all began. I'm now living with my mom to help support her care.
[00:04:23] Speaker C: I want to make sure to point out that none of us consider ourselves to be experts on aging or senior care. Well, at least we weren't until we started to care for our own parents.
[00:04:32] Speaker B: Yeah, we didn't realize how much was involved and how many resources we needed help with.
And you know, we didn't start that way. We woke up one day and realized we've learned a lot from all the grunt work we've done trying to figure this all out. In this podcast we will share advice on how to care for an elderly loved one. Resources to get the help you need to deliver care how to navigate the senior care world as it relates to finances issues to address that you may not be thinking about. We found a lot of those and of course, updates on our mom Joanna on how she's doing.
[00:05:09] Speaker C: This might be a good time to point out that while this can be a really overwhelming subject, there are a lot of really good, funny anecdotes and we will share many of them regarding our mom Joanna along the way because you have to find a way to have some levity in situations like these.
[00:05:27] Speaker B: Considering each episode will be a different family's experience. For this first episode we'll share ours and later we'll bring on our expert, Kelly Petty, who is the director of nursing at a local senior living community. We were fortunate to have Kelly at the helm of our mom's 100 bed senior living facility when mom moved in there last year. And she was a valued conciliary when we wrestled with the decision to do the unthinkable and move her back home. So here's our story.
[00:05:58] Speaker C: So mom evolved into dementia. I always try to think of it as pretty slowly, but actually there was kind of a rapid bump progression over the last few years. However, our goal was always to keep her in her home. And after my dad died, it wasn't even a consideration that we would move her. She was very with it at the time. She had a very deep emotional connection to the home and she'd lived there for decades, since the 1960s in this very tight knit community.
Her very clear and specific wishes, in fact, were that the next move she made would be to the funeral home that carried her out of her existing home. And for many years we actually thought that would be fine. She did well on her own.
It was only really recently, over the last, I would say probably five years or so, that we started to take some notice that things weren't as they had been when she was, you know, younger and more with it. But in order to keep her home, we did install some helpful tools such as cameras, which we'll get into later, and some grab bars and some key spots in her home. Just different kinds of ways to sort of make sure that she was safe but also living independently.
And then we started to go through a series of events that started to cause some increasing concern.
And one in particular culminated in a very scary moment.
[00:07:27] Speaker B: And I just like to jump in here and say, you know, we're gonna go back, as Karen said, into a lot of this detail, but let's just not gloss over the fact that these stages that of decline that mom went through. Karen was the one on the front lines dealing with a lot of this stuff.
Julie was close, but 45 minutes away. I was a 15 hour flight away. Karen was a five minute drive away. So she was one that was really better or worse.
[00:07:55] Speaker C: I was at the helm.
[00:07:57] Speaker B: Yeah, she was at the helm and also is the one who just was watching day to day and having to deal with things day to day much more than than the rest of us. And so first of all, thank you for that Karen again for your yeoman's work on the heavy lifting there.
[00:08:13] Speaker C: I'd love to say it was a joy.
It wasn't.
[00:08:19] Speaker B: I'm sure it wasn't so and so for this inciting innocent that she's mentioning.
I wasn't there, but she was. So I'm just going to have her kind of walk through what happened that night. And as I recall, Karen, the first evidence that there was something amiss was when you did your normal check of the cameras before you went to bed or got back.
[00:08:41] Speaker C: Actually, it was in the morning, and I was planning on heading over there in a little bit, but I thought I would do a quick workout. So I checked on mom on the cameras.
She seemed to be fine, but for whatever reason, I decided to check again maybe a half an hour later, and it was clear that something had happened.
I rushed over to her house only to discover that there was blood everywhere.
[00:09:10] Speaker B: What was the first indication when you looked at the camera that something had happened?
[00:09:14] Speaker C: I could see that she was navigating a mop down the hallway. And the cameras don't check everything. We had them installed at sort of the beginning area of the house and the end area of the house. But I could see that she was moving a mop and that she had a towel covering, you know, kind of that she was holding up over her face.
I tried to call her, but she really rarely answered the phone at that point. Fortunately, I was a short drive, so I hustled over to the house. I got there in a very short period of time. I opened up the mudroom door, and there was blood everywhere, including the malls, the walls of the mudroom, and then all the way down the hallway, which she was obviously trying to clean up with a mop. I should mention that she had not wet the mop, so it was basically a dry mop that she was using to move the blood throughout.
[00:10:08] Speaker B: She was efficiently spreading blood along the floor.
[00:10:12] Speaker C: As if it wasn't bad enough, it had. It had gotten considerably worse. So I called 911 because I didn't want to try to tend to her injuries. I was nervous and scared.
[00:10:24] Speaker B: When you first saw her and spoke to her, what was the conversation like? What did you say and what was her response?
[00:10:30] Speaker C: I said, did you have a fall? Which was a stupid question. Of course she'd had a fall.
As it turned out, I don't think she actually did have a full fall. I think that she had tripped on the tile in the mudroom and hit her head on the grab bar, which we had, ironically, just had installed maybe two days prior. And she insisted that she was fine, but clearly she wasn't.
So I called 911 and when the ambulance came, I actually ran out of the house with my hands up because it looked so terrible that I, I wanted to. I don't even know. I was so emotional and so scared about what was going on inside the house. The EMTs had been to mom's house for minor falls over the course of the past year or so, and so obviously they knew that this was not something I had inflicted on. You had not murdered your mom, not attempting something terrible.
[00:11:26] Speaker B: And it was the same EMT people, they recognized her.
[00:11:30] Speaker C: Yes, we had seen them three times before.
Mom was really, you know, perfectly thrilled to see them. She was very coherent, but nonetheless, they transported her to the hospital in an ambulance.
[00:11:43] Speaker B: And when you got to the hospital and started to get her checked out, what were the extent of her injuries?
[00:11:49] Speaker C: She had fractured her nose and she needed 23 stitches in her face. We were very fortunate that she didn't have a head injury because, you know, this really could have been far worse than it was to. Despite the fact that it, it looked scary, it. It wasn't life altering in that respect.
But nonetheless, you know, after spending the entire day in the er, I was really worried that they were going to stitch her up and send her home in my care.
And I, I was worried that I couldn't take care of her on my own. And there were just a myriad of issues that could have happened. And I was really struggling. And so I was really grateful that the doctor chose to admit her to make sure that she didn't get an infection.
[00:12:39] Speaker B: And so they admit her and she spends how much time in the hospital before the next step?
[00:12:48] Speaker C: I think in total, she was there maybe two and a half, three days.
And again, the entire time that she's in the hospital, we're worried about, well, okay, then what?
Fortunately, Mom's insurance allowed her a stay in a rehab facility, which, I don't know the ins and outs of the insurance world, but basically they felt that she wasn't capable of going home and taking care of herself on her own right away.
So now that led to a whole discussion about where is she going to go to rehab? What do we know about these rehab centers? Is there a place that's available to take her? Is that a reputable place?
We were really lucky that Julie, our sister, did a lot of that frantic research to get her set up in a place in a relatively short period of time. But throughout this whole time, we're now having a lot of discussions about can she actually go home once she's released from the hospital? And after A stay in a rehab facility. And you know, that led to a lot of really stressful conversations among the three of us.
[00:13:57] Speaker B: Yeah, I remember that was the pivotal moment for me and I think we were all kind of aligned at this, in this point where up to that point we were assuming that the compassionate thing to do was to try to honor her wishes and let her live at home as long as she possibly could. And now we finally realize that that stance, that approach was actually being a bit negligent. And the compassionate thing to do was to get her the support she needs, get her into a place that can take care of her, make sure that she's safe, and thank God she's kind of a weeble. So like when she falls, she kind of rolls around. She doesn't really, she hasn't broken a hip or anything. Nothing dramatic, too dramatic has happened beyond this fractured nose. But we realized the time had come and it was, it was the, it was the time to put her in a facility.
[00:14:51] Speaker A: Right.
[00:14:51] Speaker C: And that had really for all of us had just been gut wrenching because we felt horrible guilt about moving her out of her home, especially when she was so clear about her wishes. And the other piece is that, and I'm sure this is the case for most families when there is an incident, you are left with very little time to make enormous life altering decisions.
And again, we were lucky that we were able to buy this time that she was in the rehab center, but it wasn't very long.
And so we are quickly scrambling to figure out what's the best place for her to now to live so that she can get the kind of care that she needs, but also be able to live at that point in a somewhat independent mode. And those are hard to find. And also are they available right away? Is there a place that's right for her? And we were fortunate that an assisted living facility had actually just opened right next to my school.
And it looked like a lovely place. It was brand new, in fact. My principal at my school, her father in law had just moved in there. And so that became a very obvious choice for those reasons. And that really became our big decision.
[00:16:15] Speaker B: It certainly was.
So thank you for that. Thank you for reviewing that for all of our listeners here. And that was our initial journey, getting to mom into an assisted living home.
And at that time we all felt a mix of relief, more me and guilt, I think. More Karen.
[00:16:38] Speaker C: It really, as much as, you know, it's the right thing to do, it really is. It tugs at your heart, I'm sure.
[00:16:45] Speaker B: It does.
But thankfully, all three of us were aligned that it was the right thing to do. Which, by the way, we'll talk about in subsequent podcasts, is not always the case within families. These are things that we feel very lucky about for ourselves.
And so I think that's a good spot to pause. And in a moment we'll bring in our superhero, Kelly Petty, who is the director of nursing at Charter Senior Living. So stick around and we'll be right back.
[00:17:26] Speaker A: When you see the moon at night.
[00:17:46] Speaker B: Okay, we are back and our very special guest, who we love dearly, is with us. Kelly, how are you?
[00:17:54] Speaker D: I'm great.
[00:17:55] Speaker A: How are you?
[00:17:56] Speaker B: I'm good. Karen is good. Karen, you are good. Correct. Good.
[00:18:00] Speaker A: Hi, Kelly. Good to see you.
[00:18:01] Speaker C: Hi.
[00:18:03] Speaker B: So we were just discussing mom's evolution towards staying with you and staying with.
[00:18:13] Speaker A: Her at assisted living.
We didn't move her into California.
[00:18:16] Speaker B: That's what I mean. Right.
[00:18:18] Speaker D: As much as I would have loved to take her home with me.
[00:18:22] Speaker B: Maybe.
[00:18:23] Speaker A: A little more than you were bargaining for there.
[00:18:25] Speaker D: Maybe a little bit initially.
[00:18:27] Speaker B: Yeah, maybe, maybe.
And so first, before we get into some of the. The chronology and stuff like that about Mon specifically, Kelly, can you just give us a quick intro of like, who you are and your experience and. And how we all came to meet?
[00:18:45] Speaker D: Yeah, absolutely. So I have been in healthcare for about 20 years now, a nurse for around 18.
And I've done every avenue of healthcare. I think that I can think of oncology, med, surge, and I've kind of gone round and round, hospital setting, nursing facilities, long term care, short term care, all the things. And I really, truly found my passion in gerontology, specifically with dementia and Parkinson's. My grandmother battled Parkinson's for 14 years and I was her primary advocate and caretaker the last few years of that. And really kind of just honed in on what is so needed in our country at the moment. And with that demographic and it is really truly geriatric. And so I transitioned over into senior living about five years ago and just absolutely fell in love with the completely holistic approach of everything that it entails.
[00:19:49] Speaker B: And can you walk us through? I know at Mom's Place there was kind of three different types. And a lot of lot of these facilities are like this, where there's independent, there's assisted, and there's memory care, those three types. Can you just walk us through what those differences are?
[00:20:03] Speaker D: Yeah. So independent living is really that you are independent. You can cook for yourself, you can clean for yourself. You have those a la carte options for Somebody to come in and clean. You can also partake in those dining experiences. Most independent living communities have just like a breakfast and dinner option and lunches kind of on your own.
Now assisted living, it's more all inclusive as far as levels of care and options for care, as well as meals, laundry, housekeeping services, and memory care is just an extension of the assisted living with the different programming tailored to that cognitive deficit that those residents are experiencing.
So although we did have a lot, and I still currently do have a handful of residents that are very independent, still driving, but they want to be able to just age in place. And so they don't want to have to move again. They don't want to have to worry about cleaning, they don't want to have to worry about doing their laundry, cooking, et cetera. And they're in assisted living. So if something does happen, it is right there at their fingertips and they are able to then agent place.
[00:21:14] Speaker B: Yeah, I remember it was interesting seeing the couple that was living across the hall from mom and it seemed like they were fine. You know, they were like. It was. They had a, you know, obviously like whatever. I think it was like a one bedroom or something a little bit bigger, you know, two bedroom and one was like kind of their office. And they were walking around and taking care of themselves. And it was interesting. And then. But I also remember like, you know, a few weeks passed and then I saw one of them like in a wheelchair, you know, so like they're obviously dealing with something that you don't even. I didn't even know. And there was a reason that they were preparing for something to come come, which unfortunately, I guess the inevitable comes at some point for everybody and it's. It's difficult to. To predict.
And when. So like when we had mom, mom had this fall and she went to the. She, you know, fractured her nose and was bloodied everywhere. And it was like the fourth in a, you know, series of pretty serious falls. And they were. She was in the rehab place and, and we had been advised, you know, at this point we're still kind of like trying to figure stuff out ourselves and thinking, okay, we don't think that she can live at home alone anymore. And 247 care, the cost of that was just nothing we could even consider was totally prohibitive. And a lot of people advise us and would like your take on this as well that like, oftentimes when you're in that situation, it's best to move someone straight from rehab into assisted home. I won't say facility Assisted home. If, if the, if, if that's something that's inevitable, do you agree that that's something that's a common practice?
[00:22:51] Speaker D: It really is common. And I know you and I have talked about this previously, Andrew, but so many times, social workers of hospitals and social workers of facilities, rehab facilities, their skilled nursing facilities or SNFs. SNFs is how they're referred to. A lot of the times they are trained and I don't want to say programmed, but they, in that setting, that is what their next steps are. So they're kind of just following protocol. And so, you know, hospital discharges to a snf, a SNF discharges either to home or to assisted living or to memory care or to a group home, whatever that looks like for the family. Family, I would say 95% of the time it's to an assisted living facility just because of that 24 hour care. And that's exactly what you have. You have 24 hour care in an assisted living.
And it kind of gives that family some peace of mind. It also allows them some time to really think about what needs to happen.
Long term, is this something that's going to be feasible for mom or dad? Is this going to be, you know, feasible long term, or is this just a segue into bringing them back home?
You know, and every situation is a little bit different, Every family dynamic is very different, lots of similarities, but it really is kind of what's best for the circumstances. You don't have many days to figure all of that out. So most of the time, you know, it's two to three weeks because people are progressing in their therapy and then they kind of plateau and then they're like, okay, that's it, you're no longer progressing. This is where you're going to be at. You got to get out. And it is so derived by insurance. And so it's, it's very, it's all protocol, unfortunately.
[00:24:47] Speaker A: You know, I have to say that I felt panicked at the thought of she's in the hospital and they're going to discharge her and she's going to come home. And so when they said we're going to move her to a rehab facility, you know, our family, like so many families, you know, we were jumping into action, trying to make really quick decisions. But I will say that I was grateful for the opportunity to bring her from the rehab center directly to the assisted living home because the thought of moving her from her home directly into assisted living, it's, it's gut wrenching, right now even thinking about this, this was hard enough. I don't even, I can't even imag how people do that.
[00:25:33] Speaker B: The extraction, I can't imagine what the extraction moment would have been like at that time.
[00:25:37] Speaker A: But you must tell, you must experience that. Not everybody is coming directly from a rehab facility.
[00:25:44] Speaker D: No, not at all. And you're right, it's, it's instantaneous decision making. And when you're talking about elderly and there are so many more components to that, it's not instantaneous. There are so many things that you have to think about when you're moving somebody, regardless if they have physical ailments, cognitive ailments, or just in general. I mean, think about when you are going to be moving to a new house or a new condo. I mean, there's, there's packing, there's, you know, there's the huge laundry list of things to do and that's with any move. And so when hospitals say, okay, discharged 24 hours, you got to find a place to live. If your house is not feasible, it is, it is absolutely frightening.
And you know, somebody falls at home and they're in the hospital and they only have a three day qualifying stay, they've realized, oh, it's a urinary tract infection, you get three days, okay, back to the house. But now mom can't do stairs and they have 13 stairs to go up just to get to the bathroom or, you know, whatever the situation is. There's always a situation and there's always a step back and there's always, like you said, just complete panic. And it is gut wrenching to think about what do you do, where do you go, who do you contact.
And then of course you're infiltrated in the community with all these decisions of, you know, 13 to 15 different assisted livings, rehabs, etc, like where do you go, who do you talk to, what do you do?
[00:27:11] Speaker B: Yeah, yeah, yeah, you know, and we were part of, correct me if I'm wrong here, but part of the fortunate aspect of our situation is that Karen had a co worker at her school who had someone in your facility at the time.
[00:27:27] Speaker A: And well, and also that that assisted living home was next to my school. So when you were all opening and the steps before you opened, you kind of partnered with our school. So I felt a level of comfort. One, I was next door, which really made a difference. And two.
[00:27:48] Speaker C: I felt like I had.
[00:27:51] Speaker A: A good understanding from the, for the most part of what was going on there. I mean, you really never know anything until you get in.
[00:27:57] Speaker C: But I really liked.
[00:27:58] Speaker A: I mean, I felt for us, we felt strongly about a place where we had boots on the ground, where we could really, you know, tend to my mom in the level that we needed to, but also just really see what was happening, because I would imagine, you.
[00:28:12] Speaker C: Know, for a lot of people, they.
[00:28:13] Speaker A: Don'T live nearby, and that's not easy for them to pop in for five minutes when, you know, she needs another set of briefs or, you know, I. I could come and take my mom for a walk, and then she could go back and I could, you know, go home. I would bring my students over. I mean, yeah, it was. It was a really big qualifying factor for us in that decision.
[00:28:35] Speaker D: Yeah, it's definitely a different level of trust that you really don't realize until you're in it.
[00:28:43] Speaker B: And so, Kelly, when. So we got to the point where, like, okay, we got to make this move, and mom comes in and you're there, and we're going to. We just want to talk a little, because it's a unique situation that she was there for a little over a year, and then we'll talk about why we decided to bring her back home. And we honestly feel like both those were the right decisions at the time and would just love your take on it. So, like, when you first met mom, when she was coming in, what did you observe and did you immediately see that she was needing what you guys were offering?
[00:29:20] Speaker D: Yeah, I did. And, I mean, I guess I'm a little bit biased just because, you know, I see this every single day, so I'm a little bit more in, I think, to most needing assistance with different things that a lot of people don't think about. And, you know, where she was at cognitively, you know, she was kind of in that gray area. And I feel like having somebody in memory care is.
It's unique because especially when they have a diagnosis of dementia and they are needing cued for things and simple things, and they're forgetting the random things day to day, and not every day is the same things that they're forgetting.
You really want to just hone in on who they are as a person and what they're still capable of doing and maintaining that independence and maintaining that dignity. And so looking at all of those things, especially with mom, she.
She still had enough cognition about her to be able to live independently with assistance. And so for somebody to come in and remind her to brush her teeth in the morning, remind her to help get ready, and to keep her active in those everyday activities of daily living, that we do.
It made.
It made the decision a little bit easier for me as far as assessing her, whether or not she was ready for memory care, whether she was ready for independent living. So, you know, we. We laugh about how many breakfasts she would have. She was eating nine meals a day.
[00:31:13] Speaker A: I didn't even know she was eating nine meals a day, But I figured it out before you had told me that she was eating nine meals a day. I kept having to buy her bigger clothes, and I was thinking, oh, well, I guess she's really eating well. And then you. I love that you said, well, yeah, she goes to each meal, like, three times.
[00:31:28] Speaker D: Yeah, just about. Right. So, you know, but that.
That gave her a purpose.
[00:31:33] Speaker A: Right.
[00:31:33] Speaker D: She remembered that that's where the dining room was. And she remembered, like, it's still morning time, so it's time for breakfast.
She already had eggs and bacon and pastries at least twice, but it was still morning time. And so for her, it was still breakfast. Breakfast time.
And, you know, when you have that collaboration of all of those people involved with, you know, the chef and the nurse, myself and, you know, caregivers at side, we kind of altered portions. And so what, instead of a large breakfast, just one time, we kind of broke her meal down into three different meals, knowing that she was gonna circle back and come to Briarfest again.
[00:32:10] Speaker A: I mean, literally was circling back. That's true.
[00:32:14] Speaker D: Yeah, she did. It was great.
And that was every meal, not just breakfast.
[00:32:18] Speaker C: Yes.
[00:32:20] Speaker D: But, you know, she was. She was still able, and she was happy, and that's the biggest thing. Right. And so you want to maintain that happiness. You want to maintain that independence. You want to maintain that dignity. And those are three things that I really kind of look at and hone in on, especially when I'm assessing somebody, making sure that they're able to do those things, because that's important. And that was important for her, too. Leaving her home.
It was a disruption in her every day. But to make something like that seem normal for her and, you know, have a purpose is ultimately what we want to do in assisted living.
I don't know if everybody thinks like that. I don't think that they do. But I guess that's why my passion kind of drove me to, you know, gerontology and senior living in general is because this is the gray area of the aging process.
And so many times it gets overlooked, and they're just put in a home or they're just put in a room, and everything is done for them.
[00:33:21] Speaker A: Right.
[00:33:21] Speaker D: And it's not fair. They're. They're just stuck. And to kind of flip that upside down and really create not only an experience for them, but again, going back to giving them purpose.
It's imperative for. For these guys to really continue their journey and not have it just end in a community or in a facility or, you know, a home.
And, you know, you think of a home and in their generation, you think of these homes where it's gross walls with the wallpaper peeling off and the green floors, because 40, 50 years ago, that's what it looked like.
[00:34:03] Speaker A: Yeah.
[00:34:03] Speaker D: And it's scary. It's scary for them.
[00:34:06] Speaker A: Yeah.
[00:34:06] Speaker B: Yeah. And that's one of the, you know, and. And the multiple meal thing once we discovered it, and. And thank you again, by the way, for rationing our meals after we.
[00:34:14] Speaker D: Yeah, you're welcome.
[00:34:17] Speaker B: But that was one of the things that kind of gave us hope that this was a great thing for her, because one of the things we really worried about was obviously her being able to prepare meals for herself when she's alone, but just being alone and not having anybody in that house with her most of the time, and the fact that you're able to come and I know from experiences with friends and their parents, the sense of community and just being around people and being able to make friends and sit at the table with someone. And not everybody with dementia is a great conversationalist, but there is activity and there is. There are events that you guys had going on all day long, which was great, and you're just near people, and there's that. That interactivity seemed to be something that's really useful, and we just love that in the beginning.
[00:35:04] Speaker D: Yeah. And I think that's why mom circled back for multiple meals, is because she'd be leaving the dining room and somebody new would be coming to the dining room that hadn't eaten breakfast yet. And they would pass through and she would just kind of make that pivot and be like, oh, I'll have breakfast with you. Are you going to breakfast? I'll have breakfast with you.
[00:35:23] Speaker B: Why not?
[00:35:25] Speaker D: Yeah. And she loved that. She loved the social socialization. She loved the interaction, you know, and it was a new face.
[00:35:32] Speaker B: And I think also another thing that was we found interesting ourselves, which you don't realize because you didn't know her before her condition.
But, you know, we're lucky that she's kind of this sweet, blissful dementia. You know, she's not really agitated. She's not wandering in the middle of this. Of the road. She's very agreeable. Even if she kind of objects to something.
And so. And I don't. I remember you mentioning that you guys adored her. And. And it didn't really. And we were very happy to hear that, too, because that's become very sweet.
[00:36:07] Speaker A: And nobody would have described our mother as sweet.
And she was. She was rough.
You know, she said what she meant when she. Before the dementia diagnosis and even really, up until maybe a couple years ago, she was very blunt and not often she wouldn't couch comments with, you know, the ability to try to make you feel better. She would just say what was ever on her mind. Oh, is that how you're wearing your hair? Is that what you're wearing today? Well, what's your. You know what?
Why would you make that choice?
[00:36:41] Speaker C: She was really.
[00:36:41] Speaker A: And she was hard on us. Well, my sister and I can definitely speak to that. I don't know if Andrew felt it as much more than hard on us growing up and hard on us through our adult years. And so we almost find that. Listen, you know, dementia is a terrible thing, but they're. The bright side for us is that we have this lovely, sweet lady who I had never experienced before. So we're grateful for that.
[00:37:06] Speaker B: And that's. Is that unusual, Kelly, to. To see that pivot like that?
[00:37:11] Speaker D: It's really not.
And usually when they're mean and feisty, they become very sweet, or they become 10 times worse.
Or if they're very sweet, sometimes they become really mean and feisty.
[00:37:25] Speaker A: Right.
[00:37:25] Speaker D: Just really depends on the part of the brain that's affected.
And, yeah, I mean, mom is absolutely a sweetheart. So sorry, Karen, that you didn't.
[00:37:38] Speaker A: She's really nice to me now, and I'm very grateful. But it is. I'm not gonna lie, every time I walk in there, I think, oh, my mom's gonna make a comment about my outfit. But no, she doesn't make any comments at all. And it's. It's kind of delightful.
Yeah.
[00:37:54] Speaker B: Yeah. And. And so. And so as she was.
So the first few months were also kind of bliss for us, you know, and not us. I would say, Karen, specifically because.
Shout out to her. She has done all the heavy lifting for so many years, and just to give. Give her even the tiniest bit of break, which this. This home did give her, was wonderful. And we knew she was being taken care of and that she was safe, and that was all wonderful. And we saw her going to meals and meeting people and going to the. The movies.
I started teaching a class there from my time in China. I just Started teaching a class an hour a week about Chinese culture. And she was there and all proud of me and saying, that's my son. And everybody was all wonderful there. Everybody there was great. There were so many great people there and everything was going great. And then we just. We started to notice little cracks here and there.
And it should be mentioned that Kelly was there for the first few months of Mom's Day, and then she moved on to her next place. And.
And so that. Not to say that that was the reason that things started to derace after.
[00:38:57] Speaker D: I mean, it might have been, but.
[00:38:59] Speaker B: It might have been.
But, like, you know, I was mentioning before you came on Kelly about how important it was that I noticed when she was staying with me in la, you got to be there when she's getting out of bed. Like, if you're not there at that moment when she wakes up and she places her feet out of the bed, you could potentially have a carnage situation on. And we found that often, not most of the time, but there were obviously times where they didn't catch her. And that was clearly. These detailed care plans that are put together was clearly in the care plan that that had to happen. And that wasn't happening. Every once in a while, the laundry wasn't done and Karen would have to come over and do it. It wasn't folded and somebody would have to fold it. There was these little basic things and not huge things. I mean, she was being fed and kept alive and going to events, but these things that kind of make it home started to. We started to notice some. Some kinks. And so. And then we're having to spend time doing stuff and cleaning stuff, versus hanging with her, which wasn't the whole purpose of having her in that facility. And so that's when we started to start, you know, to think about, wow, is this. Is this the best that that can happen? And then you're six months in and you're like, what, we're going to transition to another place?
So. Well, it's a very difficult situation for her.
[00:40:14] Speaker A: The bigger piece is that we thought, she's starting to adjust. She's making friends, she's making connections here. But every single time I would see her, which by the way, was several times a week, she got into this process where she would take all of her clothes out of the closet and the dresser, she would pack them up into the two laundry baskets that I have there. She would take pictures off the wall. And then I would come to see her and she'd say, I'm ready to go home now. And she did this. And even when people would come to visit her, she'd say, I'm only here for a little while. I'm not. I'm going to go back to my home. And we hadn't sold her home because Andrew had come back to Michigan. He was staying there. And also we just wanted to make sure that, that everything was okay. So we are also, I should say, financially paying for her house and paying for this care. And I had a lot of frustration because my whole goal was to be able to have a relationship with my mom where I could spend time with her and really enjoy that. And that wasn't happening. And in fairness, I think that her needs were kind of beyond what we.
What maybe what they were able to.
[00:41:19] Speaker B: Provide, or I actually think it's the opposite in a way, like we were paying for things that she didn't.
[00:41:24] Speaker A: Well, that's fair, that's true.
[00:41:26] Speaker B: So it cuts both ways.
And so cut to. I'll update the. The audience here. Kelly of what happens is that Karen comes up with this great idea because I'm starting to spend a lot more time in Michigan anyway from L. A.
And we're hesitant to sell the house because we just don't know what the future situation is. And she came up with the idea, you know, like, what if I become her primary caregiver and I live with her in that house, that 50 year house that we've been in, and we get caregivers to come in at certain intervals during the day and if we can do that, that's something financially that can kind of equalize the total cost that the assisted home was. And I remember talking about it and then having a chat with you about that. I don't know if you can share with me if you recall that and like what your advice was, you know, like whether that was the right thing to do. Because I knew it was unusual. Yeah.
[00:42:21] Speaker A: But I will say this, that when I first I had the conversation with Julie, our older sister, who initially said, well, that's ridiculous. We just finally got her into assisted living. But when we started to dive deep, she sort of thought, aha, that's not the worst idea. And then when I presented to you, you used my favorite word that you use when you're really going to punish something you said, intriguing.
Both of you would immediately say, that's absurd. This is ridiculous. And in fairness, I had never heard of anybody who finally gets their mother and assistant or their parent or a loved one into assisted living and then decides they're coming home. I didn't. I didn't know that even existed.
[00:42:56] Speaker B: And what'd you think about Kelly when I. When I raised that to you?
[00:43:01] Speaker D: So you guys are definitely the exception to the rule. Okay, so let me just preface with that.
Your family dynamic is very different than most.
So I thought because of all of that, it was a great idea for her getting to know mom and all of you guys having those things in place, having caregivers that you knew that you could trust, that you could have mom really have that one on one person, focused care in her own home because she was not at risk to leaving the home in a way that, you know, again, you've set it up to where you've got cameras in the house, you have every real avenue and safety measure possible to have her in a space that she knows and that she's comfortable in.
And so why not, right? Like, it's not a problem until it's a problem. I know you've heard me say that over and over again, but it's so true. It's not a problem problem until it's a problem. If that's where she wants to be, if the means are there, from financial, from care, all of those things, try it. Because you can always go back to the other.
And it really is truly depending on the person, depending on the family, depending on all of those things that you have in place to be able to make that happen.
And she's flourishing. She's doing great.
[00:44:39] Speaker B: Is. And I. And honestly, my main concerns when we were thinking about it was one of the big ones was this community. Like, she's got a community there now, and she's, you know, she's meeting, she's around people and she's having conversations and going to events.
When she was at the assisted home, and then, you know, I would also hang out with her. You know, strategically, my Chinese classes were just before Friday happy hour, which was the best scheduling move of all time.
And I'd sit there with her and everybody, and I started to realize that she wasn't really having conversations with people. You know, like, she. She is very. She. Her mind is such that she can easily react and say something very easily, quick and, you know, directly to you, but she's not going to command the room at a table with four people. She's not going to interject and lead a conversation. If you ask her to kind of express herself in a certain way, like why this or that, she's not going to be able to really give you a strong answer. So.
And we realized that we can replace some of these activities with people coming in the house, which we have now. And it's been. It's been. It's been really great. And we're. We're so lucky to have these great caregivers, which are doing an amazing job. And it's been.
It's been actually a joy.
So we just got a couple minutes left, Kelly, but I thought maybe you could just close by telling us a little bit, like, what is it? What are some of these things that we, you know, people should be looking out for when making these decisions? And is there any advice? Because it's so daunting to try to, on your own, get all this information and do all the research and do all your phone calls. And it's. It's like, is there one thing that people should think about, even maybe taking a step back or trying to get the right resources before they embark and make some big decisions on all these things? Is there anything that they should really think about?
[00:46:38] Speaker D: Yeah, they need to not be selfish. And I know that sounds a little bit harsh, but you guys had such a great outlook on what's best for mom, right? Not what was convenient for you, not what was convenient for, you know, anybody else around her, but what was best for her in that moment. And you guys knowing her, knowing that she needed a little bit more structure during the day, knowing that she needed somebody to be there as soon as her feet hit the ground, knowing that you guys were not able to provide for that in the moment, but also wanting to just be her kids again.
And that is not being selfish for her.
That is really just looking at the entire holistic picture about things and even bringing her home, it was about her. And so that goes to say with, and you said it too, the resources, I think that is your biggest thing that you need to look at as a whole. What resources do you have, not only in the community, but right there at your fingertips? Is it assisted living? Is it 24 hour care in the home? Those resources are. Is it an agency knowing that that agency might not show up and you have to have a backup place and plan?
Or is it just private duty, people that you know that you can trust, that you can rely on, you know, all of those things.
So understanding your loved one and understanding the resources around you and really just communicating, making those lists of pros and cons and understanding not just the dynamic of the situation, but who mom or dad is as a person, what they would want, what they need and what is doable.
And so it's definitely not easy, and there's no right or wrong decision because it can always be changed.
[00:48:43] Speaker B: As you guys know, that is a good place to leave it.
Thank you so much, Kelly, for everything that you do, but also just for sitting with us here today and talking through some of these things.
We're eternally grateful, and we will talk to you soon.
[00:49:00] Speaker D: Yeah, absolutely. Thanks for having me.
[00:49:02] Speaker B: And we'll be right back.
Well, that was illuminating to talk with Kelly and hope you guys enjoyed hearing about how she came into our journey and helped us immensely with everything that was going on with Mom.
And just for the wrap up, I'd just like to say, you know, it might seem weird to say that someone who gets a diaper change three times a day and can't remember her husband's name is one of the lucky ones, but mom is one of the lucky ones. We feel, thanks to our incredible caregivers, her daily needs are being well met, and she kind of seems to breeze through the day not without some confusion, of course.
And actually, I've often wondered whether she's really okay and is this a life that she would really want to be living if she had the choice, you know, back when she was not with dementia and kind of a different person, but when I see her singing and playing the piano at her in her home and. Or laughing at a TV show or telling her caregiver, you look great when they write everyone whenever they arrive, she says, you look great every single time when they arrive to start their show.
[00:50:41] Speaker A: Nice now.
[00:50:42] Speaker B: She's nice now. Yeah. But when I see all those things, it's pretty clear that life is good for her right now. And I know we're lucky again in the sense that that's the kind of dementia she has, but the fact that all those things are happening, even with a lot of the difficulties, well, I just think that's a victory.
[00:50:59] Speaker A: I would agree. Also, I just want to add in quickly that we are certainly not knocking other situations that people do for their loved ones. I think there's so many different ways to go about caring for a loved one, and honestly, that's kind of how we ended up here in this spot. We want to hear from you. We want you to share your stories, your questions, your queries, to create a community of caregivers or people who are just curious about what steps might look for them and their loved ones going forward.
So over the course of the podcast, we'll be sharing lots of ways for you to share with us, but in the meantime, we just want to remind you that if it's not one thing, it's your mother.
[00:51:36] Speaker B: It certainly is. And that's a wrap for today.
Hope you guys are all doing great and we'll talk to you next time.
We wanted to add a short programming note. In the talk you heard earlier with Kelly, we mentioned she was with Charter Senior Living. Since we recorded that, she has left Charter and has actually started working with me, Andrew, on a senior advocacy organization.
We're really excited about it. More details on that coming in the future. In the meantime, as Karen mentioned, we would love to hear from you. Email us your comments, questions, stories, or anything you feel like sharing.
You can email us at ifitsnot1gmail.com and now, once again, here's mom to play us out.
[00:52:35] Speaker A: And put on Happy Face.
And when you see.