A Daughter's Journey Through Dementia Caregiving

In today's episode, we go on a personal journey of caregiving with my guest, Kim, a long-time listener of our podcast and a daughter navigating the complex world of dementia care for her mother. Kim's story is not just moving—it's filled with insights that only a dedicated caregiver can offer. Whether you're a caregiver yourself or just someone interested in understanding the reality of living with dementia, this episode promises to enrich your perspective.

Episode Highlights:

[00:25] - Kim shares how the podcast has been a lifeline in dealing with her mother's dementia.

[02:11] - Kim talks about her mother's initial symptoms and the onset of her dementia journey.

[05:27] - Discussion on managing dual caregiving roles as Kim's mother's condition progresses alongside her boyfriend's Parkinson's diagnosis.

[08:38] - Exploring the effects of sensory loss on dementia symptoms.

[14:59] - Kim recounts the emotional decision to move her mother into assisted living.

[19:11] - Adjustments and challenges with her mother's care in the assisted living facility.

[25:21] - Evaluating the necessity and timing of transitioning to memory care.

[30:35] - Managing complex family dynamics and the impact of caregiving on personal lives.

[39:56] - The personal toll of caregiving and maintaining a balance in personal life.

Do you have a caregiving story to share? Barbara would love to hear from you! Please leave her a message at 310-362-8232 or send her an email through DementiaDiscussions.net. If you found value in today's episode, please don't forget to rate, follow, share, and leave a review. Your feedback helps us reach more listeners and continue producing this content.

Transcript

Kim: 0:00

You got to go with the flow. I think one of the other things you've always said is like, you just got to meet them where they are. Right? So wherever she is, whatever it is, in that moment, if she thinks there's a guy doing construction in her bathroom, then that's what's happening. Because it doesn't hurt her to say, Yeah, you're right. But it'll be over soon. It doesn't hurt her. In fact, it settles things actually sometimes a lot easier to just settle it and be like, yeah, that's happening. Yep. Yes, it's always

Barbara Hament: 0:26

a better response than now. Hello, and welcome to dementia discussions, the podcast for and about caregivers. If you'd like to share your caregiving story with me, I'd love to hear it. Please call me at 310-362-8232 or email me at dementia discussions.net. Today on my show, I'd like to welcome Kim M, happens to be a regular listener to the show, and contacted me expressing interest on telling her story here today. So I'm thrilled. I'm so happy to have you. Welcome. Great to meet you. Finally.

Kim: 1:12

Thank you, Barbara, I have to say just listening to all of your podcast was almost 300 I think podcasts over this time period that I started, which was probably the fall, it's just been so excellent. And just so informative for me, because with my lifestyle, I don't have a lot of time to read a lot of books. And so to be able to listen to the podcast while I'm doing other things is really, really helpful. And this is your I'm so happy that you do this for everyone. I'm not a part of your network of people. But just being part of this and listening to it has just been so helpful for me how to deal with my mom and things like that. So it's been great. Thank you for doing this.

Barbara Hament: 1:54

Absolutely. That warms my heart to hear that that was the whole point of starting this podcast. I really don't know the 1000s of listeners. So it really that brings me such joy to hear that. So what brings us here, tell me about your mom.

Kim: 2:12

My mom has dementia. And she um, just to give you an idea of who she is. So she's a 77 year old woman. She is a retired history high school teacher. And she has two girls, my sister and I, there's four years between the two of us. We grew up in the Northeast. And then about 17 years into her marriage, they divorced. And she has been living on her own until most recently having different boyfriends different relationships over the years. My sister and I have moved around a little bit. And she Thanksgiving time of last year. Basically, we weren't my sister and I realized that is her that she just wasn't quite right. knew what was going on. For some time. I've been getting some phone calls from her friends, what's going on with your mom, she got lost on the way to the bathroom in the restaurant, the restaurant that we've been to 40 times over the last 25 years. So we knew something was going on. It's just so hard because we weren't living near her. We just didn't really know how to handle it. And so I started looking into ways to handle it. So we were doing basically we were doing doctor calls, and just listening in to make sure she was okay. But really I think it all started with a bad cataract surgery. And that kind of started to decline. She was like super healthier with whole life until this bad cataract surgery was caused her to have glaucoma. And so she ended up losing her sight in one eye. So from there, she started to decline a little bit. And she was she'd been dating her boyfriend now for about 16 years. And they traveled together a little bit. They have a nice life together. They live in their different homes. They all have they have different homes. And so they travel around to the different homes. And then she started to come down south to visit my sister and I. And that's when we noticed something something's not quite right. We also learned that her boyfriend was diagnosed with Parkinson's. And that was a long time ago. That was like six, seven years ago. So we were like, Ooh, maybe Mom's going to start taking care of her boyfriend now like who this is going to be difficult for her. How are we going to handle this and all this because we weren't living in the same state. Basically what happened was we started, we heard that she was having some falls. So she had about three falls. This was not something that she shared with us. We learned about it through doctors through friends mistakenly learned about it. We were like oh my goodness. Okay, so she's falling. Alright. And then we heard about these, like I said before the moms getting lost. And then our phone conversations were just straining She was agitated, like picking fights with me was just weird. We have a really good relationship. So it was really bizarre to me that that was happening. And my sister and I were talking about it. And we're like, there's something going on. She's not remembering things that were current thing. So the old things she can remember, it's the current thing she couldn't remember. And like, then we noticed she couldn't remember what day it was, and stuff like that. So it just got, it got really tough.

Barbara Hament: 5:25

Our boyfriend wasn't calling us saying, Hey, I'm

Kim: 5:27

noticing. Not really now he was. It's been like taking care of her. For, I would say, two to three years, I think he took over all the billpay managing the properties, like she would tell him what's going on. But he would really do all of it. So I think he started taking over all that kind of stuff. And then I realized, like, Oh, she's not, she's not going in the grocery store. He's just going in the grocery store. Like you don't know it, because you're not there with them. When you hear her talk to her on the phone. And you're like, she's like, I'm just waiting in the car. Like, why aren't you going into the grocery store? Why aren't you going into CVS? And then it was like, oh, okay, all right, get it. She's not she's not as mobile or she's, or it's difficult for him to manage his Parkinson and her dementia at the same time is what we're learning. So it just became too much. So they came down to visit us in October of last year. So that's where we are now we're in 2023 time period. And she had like a psychotic break, don't really know how to describe it necessarily. I don't think that the emergency room because my sister took her to the emergency room really labeled it but she started having delusions, and paranoia, and accusing us of doing things that we weren't doing. And then accusing her boyfriend of having an affair with the woman on the airplane, the stewardess on the airplane. And it just became very strange. And so my sister ended up taking her to the emergency room. And they didn't, they didn't, they just calmed her down. They don't know what to do with that, from what I've gathered over, learning about this. So they they just gave her some sedatives to like, stop the spinning and the delusion and the paranoia. It was really, really scary. My sister was like, really scared. I happened to be out of town. And then I got back into town. And she had already gotten home from the hospital. And it was like, she was in she was in rough shape. And we realized that was done a visit like this. She just came down for a week. And this all transpired. And yeah, never had heard anything like that before. No, no, not that not that we were privy to now whether she was like that with her boyfriend. I don't know. But and that could be right. But we weren't made privy to it. He's very private. And that's another reason why I've been a little loose on one of the details. But we were worried. And we have a very close relationship with her. And she was just getting really just sort of strange. And not just the not just the forgetfulness, but the paranoia, and the delusions are things that are happening that weren't happening. She was seeing things that weren't there and describing this sort of really strange mental behavior. So her officially said, yeah, so her vision because of that, because of the glaucoma ended up that she was she did not have any sight in one eye. So she had been dealing with that for a long time. And I've been to many appointments with her either virtually or in person to deal with that, but there wasn't any way to fix it. So she was her vision was was poor. In the sense one side was perfectly fine. The other side, she really can't see at all.

Barbara Hament: 8:38

As anyone mentioned anything about vision loss, like sensory loss, and delusions and hallucinations.

Kim: 8:46

No, they've definitely made the connection between the input to the brain by losing sight in one eye that the input to the brain could have hastened along dimension maybe, or hastened along some sort of issue, but I don't, and they no one ever tied it to the delusion and the paranoia. There is something called Charles Bernays and girl Have you ever heard of that? Now, Charles, Charles been nice and narrow, and it's related to vision loss. The Oh, and she The reason the reason she had this surgery, she just had like a cataract and it's just basically a cataract. And the surgery went bad is basically how it was described to us that tissues weren't properly in place, the muscles weren't in good shape. And so the optimal surgery that they usually do with cataract patients was not, they weren't capable of capable of doing that, because of the structures and then it then it just resolved into basically having glaucoma. So the pressures in the eye constantly worrying about that she did a lot of eye drops and things like that. So it gets to be a lot for her in that sense, but no, I'd never heard of that.

Barbara Hament: 9:55

Charles Bonet Vonn at syndrome refers to visual hallucinations caused by the Brains adjustment to significant vision loss. So, visual hallucination, very

Kim: 10:06

interesting. Yeah, we had not heard of that. She was being worked up for lots and lots of things, getting lots of scans and MRIs and all this stuff. We're trying to figure out what was wrong with her what's wrong with her. She was having like, these. They weren't the psychotic breaks for like, almost like panic attacks. And we've always known that she's had a level of anxiety. She's always had anxiety. And it really did her well during her divorce and things like that to keep her going. And she was just like, such a really great mom as we were growing up and stuff. And it was difficult for her. I think the anxiety was good for her. It's at those points. And now it's like too much.

Barbara Hament: 10:42

So which could be a whole? I'm sure they checked it. No, we just infect Yeah. And she didn't Yes, yeah. character for that

Kim: 10:50

didn't hospital ran all sorts of tests on her. That's like one of the first things they did a blood test, scans, MRIs. And they worked her up really well, to find really nothing. And she's been a very healthy person before,

Barbara Hament: 11:03

before this time period. Was she'd been diagnosed with dementia of some sort. Has anyone said, yes, she has? No. So

Kim: 11:11

what ended up happening is she wanted her her internal medicine doctor for the last five years wanted her to have a cognitive exam. And she wouldn't do it. She would schedule them and then cancel them, schedule them and then cancel. So by the time we got to the point where she already really had dementia, even though we didn't diagnose it that way, we knew it was. And she was too far gone to go through the testing. To be too difficult to agitating. Yeah, it was just there was no way she could handle it. She couldn't sit through it. So we went through appointments for cognitive exams. And then we had an appointment for a neuro psych, which you and I both know is what, four hours or something like that. So yeah, yeah, she really wanted to do it, but there was no way she was able to handle it. So we ended up not ever doing that, and therefore not ever really getting a dementia diagnosis. She did have a dat scan, which is the thing they use for Parkinson's. Right? And she did get it was a little weird that they didn't really say it's Parkinson's. They said, Oh, well, it looks Parkinsonian. So there's Parkinsonian syndrome, I guess. And then there's the actual disease itself. And so they get they tried levodopa on her. And it really didn't work. It really had some bad bad side effects. So we ended up taking her off of that. So in October, we decided after this hospital visit, she wanted to go back home, and she wanted to go back up north. And we were like, okay, they're living together, alone, no help or anything like that. Her boyfriend was really like dealing with everything and taking care of her. And it was a she seemed to be okay to continue doing that. Although I was very concerned. Before this, I had already started looking at AOL facilities where we live just in case, because we knew something was going on. So we sent her home. It was not my choice. Mike was really like upset about it. I knew it was the wrong decision. But I there was so many factors involved. And my sister wanted her to go back and didn't want to do this right now. So we did move her back. And then about two weeks later, our her boyfriend called my sister and on two different occasions and said, I just can't do this anymore. You got to come get her. And we were like, Okay, we're ready for this. We had already toured all the facilities nearby. We had picked one, I had already put a deposit down. And so I just literally called this facility and I said, we're coming. And they said, Okay, December 1, she can repent. So we went back up north for Thanksgiving. So that's October to November. So we're back up north for Thanksgiving. And we decided not to give her a lot of heads up on the fact that she was going to be moving down to service out for level of anxiety, the amount of spinning that her brain does and how it physically affects her is frightening. And the doctors even though she was on antidepressants, and has been on them, and we've always wanted to think it's Cymbalta. It wasn't helping. And so we felt myself mostly that it would be better that we didn't give her all the information and just said like, this is what we're going to do on this is what's best for you. So we had an intervention, basically, where we sat down with me, my sister, her boyfriend, my husband and my mother's best friend to run the north. We have this intervention. We tell her what's going on and we're very concerned about her health and that it's just not possible for her boyfriend to take care of her anymore.

Barbara Hament: 14:58

You did exactly the right thing. Really? Yeah.

Kim: 15:00

I know but it was like, Barbara, it was the hardest decision I've ever made because I knew what was good for her. And everybody, like knew everyone that we, you know, consulted with all of her best friends. Like everybody knew what was right her. She's very close to her older brother, and I've been speaking to them a lot. I'm like that family person who speaks to everybody tells everybody what's going on. Because my mom can't make phone calls anymore. So yeah, so this is what we decided to do better, for worse, this is what we did. And we brought her down. And she stayed with me for one week. That was really hard. She needs 24 hour care. And between me and her boyfriend, we were running around helping her do everything. And it was shocking to me like it became like, like, she can't she couldn't go to the refrigerator and get anything out during me and just open it to eat it. Like she's not able to do that she can't go to the bathroom by herself. She can't put shoes on at this point. So this is this is November. This is the end of November, she was having trouble dressing. She was having trouble in my house, even finding the guestroom. Like she would go to the guest room and come out to the living room. It's about 25 feet and she couldn't find her way back to the guest room. She walked straight out the front door one time, didn't tell anybody just walk straight out the front door and down the street. I mean, I was like, where's mom greeted? And he's like, Oh, I don't know. She was just right here. And then I realized the doors half open. The Labradors are like running to the door to try to get out quick. Okay, great. That's where she went. So that was fine. She was fine. Nothing bad happened. But you know, bad things can happen. And that was real. That really scared me. So I just short time, write such a short, take your eyes off her and boom, she's out the door. I just didn't realize how quickly it was all going to happen. Meaning that decline. And so anyway, we dealt with it.

Barbara Hament: 16:52

Related, right? I mean, you think this was all? Yeah, I mean,

Kim: 16:54

there was no other diagnosis, right? We we tried to treat her for this Parkinsonian syndrome, but the medicines didn't really work. And the doctors were all like, Oh, we don't really think it's Parkinson's, so we're not really sure we should treat it like that. But it was nothing else. I mean, she had heart scans and CTS, MRIs and everything. I think there's a strong psychological component to this issue with her trauma from childhood, that kind of thing, trauma from her divorce in her early 40s. So I think that all plays a role. I don't really know in dementia, how much it does, but I think it's definitely part of it. So medicines helping her psychosis, like her delusions, and she's still actively accusatory and seeing things that are not there. Yeah. Yeah. And it wasn't as prevalent during the day would happen, like once a week, maybe. Or once every couple days. It wasn't happening every single day. So we had normal we had some normal miss, but the forgetfulness and that kind of thing, losing her way in the house that was that was every day, the inability to like get herself dressed, get organized, that kind of thing, like move to the next step like that was that was definitely happening. And I think her boyfriend was really helping her with that for a long time. We just didn't realize it cueing her helping her every step of every day, I think we didn't realize that was going on. They never traveled alone. So like, my mom was never with us by herself so much it during this time period. So he was always there. And then we realized, Oh, she's really taking care of her much more than we thought. Maybe there was some signs of it before that. But this was this was pretty severe at this point. So we moved her in on December 1 to the assisted living, which is four minutes from our house, which is fantastic. Now, my sister and I have a full time job that we share, managing her health, managing the doctors, the caregivers, everybody at the facility itself and doctor's appointments, because you have to pull her out for lots of doctor's appointments. There are some that we do there, but there's quite a few that we pull her out for. And we hired a caregiver manager if that's what you are to right.

Barbara Hament: 19:11

Yeah, exactly. So now here long list into assisted living down by you and boyfriend. Is this the end of their relationship? Or what happens?

Kim: 19:21

He decides that he's going to, we asked him, Can you please go with her for the first couple of days or the first week to be with her so she's not alone. It's a one bedroom apartment with a kitchenette and a living room and her own bathroom like it's beautiful. This place is gorgeous. And he goes well I can go for a short time. But I'm not going to stay there. I do not want to be in a facility like that. That's not for me. I can't live in that kind of environment. So I said alright, I said but this is what this is what she needs. And this is what we've got to do at this point. Years ago when we heard about the Parkinson's diagnosis of his we I begged them to make a plan. I said make up then this is this is a progressive disease, you're eventually going to need lots and lots of help, and mom's not going to be able to do it. Please make a plan if you want to be together, because I'm not married, they lived in each other's houses, whatever. But like they're not married, there's no documents, there's nothing, they don't share expenses, nothing. So I said, Please, just making plans to figure out how you can be together. This was before we knew that mom had dementia. And they didn't. They didn't make a claim. So when he calls me and says, You can't do this anymore, you got to go getter. I had to have a plan. And so I made a plan. In

Barbara Hament: 20:36

retrospect, that's probably the best thing, right? Like you gave them the dignity of going home, which they wanted to do probably at first, was he saying, Well, I can do this? I can do this. Yes. So you respected that. Right? Even though you knew in your gut, this was not going to work. But you, right, you let it happen. I think if it had happened any other way, he probably would have been upset with you guys. He's still upset with us, oh, that in the story, that I'm never gonna

Kim: 21:03

be able to escape, he does not think it's the right place, or is not in favor of it. And it's been, it's been really hard. That is, you know, a loan situation of managing him and their relationship has been really difficult our relationship with him and her relationship with them. Just because he's just not in favor of it. He really, he's done some damage there in the sense of talking to her about things that are not possible. So it's hard when it gets to be this point, which she is now, which I'll get into. It's really difficult for a dementia patient because it's just unkind to talk about things that are just really not possible. So anyway, so he goes in with her, he leaves her she was she hasn't lived alone alone in a long time. And even though there's caregivers in and out of the room all the time, there's activities eating out every day where we can bring the food in, or you can have room service, or you can Door Door Dash, like can you do anything here for an activities, social and there's happy hour, like you can do whatever you want in assisted living, it's fantastic. But she wasn't really doing all of those things. So we were worried about her with the integration. And then with him coming and going, it made it more difficult. So he left her, he then came back, came back in late January, stayed for two weeks. And then he left again. And what we're noticing is that the dementia is definitely getting worse, even when he's not here. But she really suffers after he leaves, she is having trouble more trouble sleeping. With the incontinence with the delusions and the paranoia. She gets more agitated. What we did notice is that when she went he was gone for more length of time was like a month I think we got without any visits. She was actually starting to like, level out and making friends. She made this really nice friend across the hall, another woman who lost her husband, so like they had some bonding experiences. She was making friends, she was being social. But then when he comes back, it like messes up her. I don't I don't want to say that she has like a real hard schedule, but she doesn't. But we try to and I think that that's I think that was the goal. And I don't know if we've actually achieved it, but she's getting ot PT and speech in the facility. I don't really see an improvement. But I think it's important to do it to keep her mobile The moment she arrived into the facility. They gave her a walker. I had her in a cane. And they gave her the walker and it's so much better than a U shaped Walker with the wheels and what that's called, but that's what she's using. And she is more mobile that way. But I will tell you between the physicality issues, the incontinence issues, and then all the memory problems.

Barbara Hament: 23:57

She She's gotten a lot worse. Do you think she's at the right level of care? Like do you think assisted living is enough care for her? So that's what we're struggling

Kim: 24:08

with now. So because we have the caregiver manager, who is fantastic, well known in our area have been doing dealing with dementia patients for 17 years. She and I have a good relationship we talk often we have hired a private caregiver to go into the facility. It's not someone who she actually does work for the facility, but when she's not working for the facility, she works for my mom, which is fantastic and she is awesome. She does showers and dressing and gets her social brings sort of things. Everything in the facility, my sister and I really take her out, but the caregivers put a push in and they go into the facility and see her had helped her. So we've gotten a lot of additional care in that manner with this one particular caregiver that this is not easy to get her to want to be with someone else. So She wants just my sister and I to take care of her 24/7 Or her boyfriend. She's not into these strange strangers. So this woman in particular has become not a stranger anymore. And she's great with her, and we love her. But it was recommended to us from our caregiver manager that she'd be put on the waitlist from memory care.

Barbara Hament: 25:19

So we just got the call

Kim: 25:21

last week, that there is a bed available in memory care. And we had a conference call with the care manager, and we talked about it and she was really apprehensive as to whether or not that was the right decision for my mom right now. Mostly because she's well aware of the people, the patients that are there now, and what level they're at. And so will we be putting her into everything that she does would be limited and change for her, she would probably not be able to see the friend that she made across the street that she very attached to. So we decided, at this point, for many reasons that we're going to, we're going to wait on memory care, this is going to be more limiting. And yes, it might be. I know what it is, I think she's right on the edge. I think she's right on the edge of whether it's appropriate. And maybe in certain facilities, memory chairs are different, right? I don't know, personally, I've seen a lot of facilities, but in the memory care area, I just know that this facility that she's in the population, and of that part right now is there, they're way worse than she is. And our caregiver manager thinks that it might possibly be more detrimental to her

Barbara Hament: 26:37

to change her nap.

Kim: 26:39

So I don't know if it's the right decision. Just trying to figure it all out. You make decisions as you go, and trial and error and every decision is changeable. So even if it moved, right, I mean, that's a good thing. And she became terribly depressed or something you could move her back. I mean, no one likes to move a lot of change, in a sense for her has her whole life just normally has been hard. And now with dementia, it's been it's been a lot harder. And I think also the inconsistency of having her boyfriend down and staying with her and then leaving and staying with her and leaving, which has happened a couple of times, it's really been very difficult for her. And we've definitely noticed a change when he leaves, whether or not he comes back, we don't know where I am waiting for the call to call me and be like, I want to come back and visit her and I'll be like, I don't know, the art caregiver manager has recommended that that we don't do that anymore. But I there's still hard to do to like, tell your mother's partner have 1516 years that you can't come visit her anymore. It's just I don't know if I can do it.

Barbara Hament: 27:51

I mean, what have you said to him, she's really progressed. And we've all seen it and you were here. And you've seen how she's progressing. She's

Kim: 28:00

gotten a lot worse. And we have this caregiver and that I mean, if you just explain the whole thing to him, would he Yeah. When he comes down does he stay? He actually stays in the facility with her? Yes, yeah, we've we worked out that in this particular in because he's because she's still in assisted it'd be very different if she went into memory care. But because she's still on assisted he would be he died, he is able to stay with her for a couple of weeks at a clip. Just tap right in, gets a meal plan and just stays with her. And we take them out a lot like my mom's constantly coming out with my sister and I and our children. We have all we all have children and families. And so we do lots of family activities together. And when he's there we the two of them come out with us, we take them shopping, we go to lunch, but family things, go to the club, all sorts of stuff. She's definitely had a much fuller life being down here. It's just so unfortunate that it happened after she's already had such an advanced dementia. We've been wanting to move down for longer, but it now Now there was a reason right now. Now we couldn't there wasn't a choice. No one else to take care of her. Her boyfriend wasn't signing up for that. So we had to do it, which is fine. And years ago, I got all of those documents that I needed, the power of attorney and the will and the health care proxy. So we had all those we had all our ducks in a row. So we knew that eventually did happen. Um, that was so smelly to do that. We went through it with my dad, and my dad died in 2015 of melanoma. And very quickly, we lost him. So I had already been through all of this with the legal lists and the will and took care of them until they died and that and then like so I knew already that we had to do. All of these documents had to be in place just so that we could care for them appropriately. And the boyfriend does he have a family of his own?

Barbara Hament: 29:52

Yes,

Kim: 29:53

yes to their own similar age to my sister and I actually and I have a relationship with the older daughter who's right right On my age maybe a little older than me. It's it's been challenging because she is very hands off. And hasn't hasn't really stepped in to help her dad yet. And maybe, and I think it's mostly because she doesn't think he needs it. There hasn't been that situation has not occurred yet. I've had a lot of phone calls with her. We talk like every two months or so, to talk about the two of them. Talk about her bearings, and we talked about them, how are they doing? What are they doing what's happening? Because she has eyes on them when they were up there. And now I've had I have eyes on them when they're down here. So I give her feedback on her dad and things like that.

Barbara Hament: 30:35

I mean, he's still driving, which he shouldn't have been doing yesterday. You have so

Kim: 30:40

many of your clothes. Yeah, yeah. The daughter said to me, so he's not going to have a car down. There I go, nope. She goes, Oh, really go? He shouldn't be driving. And she's like, Oh, okay. No, really. And she's, he's not going to drive down here. And he's not going to drive my my mother around anymore. Like that's it. So I feel like we're maybe moving a little quicker on our end. But who knew? Like who knew that progression of these two different diseases were going to occur like this?

Barbara Hament: 31:10

When the boyfriend said, I can't take care of her anymore to expect her to move in with you? Yeah, I

Kim: 31:17

think I think there was a level of she just needs to come down there and live with you. Oh, your sister. And I Are we just can't, our families cannot do that. No, it would have been great and lovely. But we had too many things going on in our lives, businesses, activities, different age children, it would just be really stressful. It's funny, I don't I don't really know what my mother would have wanted. Because I feel like in a sense, there is a level of like, well, why aren't I living with you? And she doesn't really quite understand why she's not that's really hard to listen to. Because she's not always nice. And to me, especially because, like the mother figure, I'm like, a little more of like the the one in command if we want to say that. Yeah.

Barbara Hament: 32:05

Yeah, she doesn't like punch person. Uh huh.

Kim: 32:07

Yeah, and making making the decisions and the hard decisions and not then my sister and I haven't really done it together. Because we have we've done all of these decisions together. It's just for whatever reason, the oldest daughter as being the oldest daughter, I have this more air about me of that I'm more cut and dry. Like, this is what we're doing. But they bought me the plan. And we're going to run the plan. And I don't know, it's weird. So she, her reaction in her dementia. For reactions to me, I've been, I've been really hard, she hasn't been so happy with me. There's a lot of caregiving that we're doing now that I had no idea was ever going to be doing. I have no problem taking over all her expenses, like we pay all her bills, we've changed, we're selling her current assets so that we can pay for her care. We're dealing with family members, updating everybody. And just there's so much involved, all the communication with the doctors need medication management. And it's a huge job. And thank God I have my sister to share with because I wouldn't be able to do anything else.

Barbara Hament: 33:10

Most people think like, oh, I'm moving my spouse parent into assisted living or memory care, whatever it is. It's going to be easier than that. There's a sense of relief. Like they get a break. And I guess, in some respects, absolutely. You do get a break. Yeah. So she asked her there. And it's a supervised setting. And it's a structured setting and all those sorts of things. But you're right. Like there's no one advocating for her at a doctor's office. It has. Its you. There's no one making. And we've

Kim: 33:38

been doing that. Yeah, we've been doing that for years remotely, and also going to doctor appointments with her because her boyfriend was not doing that. He was not part of that life, the whole health care part of her before we're talking way before dementia. She wasn't taking her to doctor's appointments. He wasn't doing any of those things. A lot of that she was driving on her own, but I would still be there were my sister in some fashion to advocate for her because they they don't, it's too hard. There's so much information. She wasn't writing anything down, she would get flustered and doctor's appointments. So it was just easier for us to help her along with that. So we've been doing that for a long time. But now it's like, oh, yeah, it's it's a lot and my sister and I share this full time job and I'm telling you, I would never be able to do it. Otherwise, it is really hard. It is time consuming. And also just emotionally triggering.

Barbara Hament: 34:29

It's just it's been it's been difficult. Yeah. So I was going to ask you how do you deal with that said sounds stressful.

Kim: 34:37

Unfortunately, she she didn't get the dementia where you're and maybe this is Alzheimer's but there I don't know how to label them all. But the one where you're like blissfully, just unknowing. She got the dementia that's, like angry and gets agitated, and nervous and deluded and paranoid. She described it as her head is spinning. It's So I'm spinning, I'm spinning. And I'm like, Okay, well, this we're gonna calm down but it there is there's unfortunately, she didn't get that kind, I would have rather turned up the climate where you're just happy. Like my grandfather had Alzheimer's. He was just happy. He's like, Oh, I'm going to eat some dinner. We're gonna hang out. We're gonna go for a walk. He didn't know who I was. But he was so happy. We live like that. I wish it if she had to get a dementia, I wish she didn't get this one because it is really hard. And I know we I talked about and read about Lewy bodies and all these other different types of dementia. I really don't know if we'll ever know what it is the kind that she has. But, you

Barbara Hament: 35:35

know, it was a good treat, like Lewy body dementia, but who knows. And you know, even if she hasn't anybody dimension, there's not as if you give a certain medication, Lewy body.

Kim: 35:47

So on the medication route, she is taking an apple, we've listened to your other people just to hear what other drugs people are on. There's nothing else that we're on the nobody else she's on. She takes a Seroquel at night, because of her spinning and agitation at night. And to help her sleep. We just started her on melatonin because she was getting up in the middle of the night walking around and making trying to make phone calls and stuff. That that and then it's Cymbalta. And for the differentiate depression, which she'd been on or different ones over the years. And that's really it as far as that whenever I keep asking like what else can we get her like what else we need to help her? Like, how do you turn the brain off, so it's not constantly driving you crazy. And that's that's the way I describe it. It's just so sad. It's really really sad. It's sad to watch.

Barbara Hament: 36:35

I hate for her to go through this like this. I wish there was something we could do. Because it's not her fault. And we're trying to make like, like music or turning on old shoes that she likes to watch. Oh, music is wonderful. Yeah,

Kim: 36:52

we've we've tried like the music on the TV, when you can put on a channel. We've tried that for caregivers have done that also for her strategies with the paranoid when we do the sibling thing. You always talk about siblings. I mean, we have to, we absolutely have to. It was something that I knew about from your show. And then I got my sister to understand this is really important to do. It's not mean, it's really it's considerate. It's actually very considerate. So we won't tell her the truth. I mean, a lot. We don't tell her. There's a lot. There's a lot of untruths, and we got to Biller, because otherwise she's gonna like go crazy. We've done a lot of that. She could get down. Yeah, so the FIB looks like just about what's going on in our lives. Or we shall ask a question something specific. And I will just be like, oh, yeah, no, we're not doing that. Even though we are just because I know it's going to give her angst or make her upset in some way. Should we just have to lie. But there have been now there's times where she's seen things in the apartment, like she's like, Oh, this man just keeps using my bathroom. Like, I don't know why he keeps using my bathroom. And when are they going to finish the construction in my apartment? And she's like, do you see that? And she points over there. And there's like, there's a big hole in my wall. And I'm like, Oh, I'm like, Oh, yeah. And I go, Yeah, I know. I think it'll be over soon. What else am I going to say? I can't argue with her. She'll get mad at me. And I don't want to agitate anymore. So we've learned that that's something that we've definitely learned. It's okay. You got to go with the flow. I think one of the other things you've always said is like, you just got to meet them where they are. Right. So wherever she is, whatever it is, in that moment, if she thinks there's a guy doing construction in her bathroom, then that's what happening. Because it doesn't hurt her to say, Yeah, you're right. But it'll be over soon. It doesn't hurt her. In fact, it settles things actually sometimes a lot easier to just settle and be like, yeah, that's happening. Yep.

Barbara Hament: 38:54

Yeah, yes. It's always a better response than No, no, Mom, that's not what.

Kim: 39:00

We don't want to talk about that. We don't want to go into that and try to argue over that. No. So yeah, so now I think because we did say no to memory care just for now. And the good thing is the facility that we chose has all levels of care, the rehab, the skills, the assisted living, the Independent Living, and the memory care, so we can cover all our bases, and she's so close to us just four minutes away. So it makes life very easy for her and for us to be able to care for her. I think we're going to be using our caregiver manager more. We're going to be figuring out what we're going to do with her boyfriend. How are we going to handle the next visit or non visit or whatever because I don't know. I don't know if this is true for everywhere. But when she goes to memory care, she can't have visitors. There isn't your ability to stay over in an apartment type setting chicken have

Barbara Hament: 39:51

visitors but she can't. They can't stay there not just that way not to stay.

Kim: 39:57

We just have to decide when I say we I mean mice And I because our care manager has already told us what she thinks. And she's seen enough of this, if we're going to let him come back down. So we're still really struggling over that. Although he hasn't called me yet to tell me that he wants to. When he does, we'll have to make a decision. I may say something along the lines of well, maybe not right now. Maybe a little bit, because she really suffered the last two weeks after you left. There was a big change in behavior, big change and agitation. Maybe we'll say that oh, no, no.

Barbara Hament: 40:30

Did he come down and not stay there with her buddy? stay in a hotel nearby?

Kim: 40:35

Okay, I almost think that might be more disturbing to her. It's weird. I think that she disobeyed because they had been living together for so long. I think that they that that might even just, she'd be like, where's it going? Was he gonna go hang out? Women down the hall, like, she's still under using him was having affairs. I know, this is like such a running thread. I noticed in all of your a lot of your other callers I should say, there's this this level of like, oh, well, they're having an affair with somebody. If he says hello to somebody, she gets upset. I mean, the last time we talked about it was so upsetting. She said something to me, like, how much did you pay him to leave was like, Oh, God, Mama, look, I did not pay him to leave. And then I was like, why don't we just call him? Why don't we just call him and then we call them and I'm like, can you please tell mom that you had to go home? Like, discuss why you had to go home? We had to go home for doctor's appointments. We had to go home to see his Parkinson's doctor. We had to go home to get his mail and all of his medications. These are his reasons, right? These are his reasons, not mine. Those are his reasons. But she doesn't believe me. She thinks I'm making him go away.

Barbara Hament: 41:41

And it doesn't really help to rationalize with her. She just No,

Kim: 41:46

yeah. When I tried them one time calling him I was like, let's just call him and discuss it. And I think she heard, but I don't think it matters. She's still mad at me. Every I think everybody deals with a level of that. Right when you're the person, caregiver. I mean, I'm not a caregiver, but we're on a team of people.

Barbara Hament: 42:03

I think we all deal with something like that. It sounds like anyway. Yeah, absolutely. You are the target of all sorts of all sorts of things. Yeah. Could you just be like, what? Just FaceTiming him?

Kim: 42:15

Oh, we do? Yeah, we

Barbara Hament: 42:16

do. Yeah, do

Kim: 42:17

I help her make phone calls because she can't really use the phone anymore. I mean, just to give you an idea of what her level of her abilities now is. She's She's incontinent most of the time. So we have her in the depends all the time, just so that she doesn't have accidents. She's very knowledgeable of it. And very in tune with what's going on with that. It's interesting. However, for whatever reason, she's having trouble going into the bathroom, and using the toilet, it becomes like this very stressful thing that she can't figure out how to do. It's really strange. I cannot I cannot describe it. It's just like, the OTs and the speech therapists and the OG EMS PTS have worked with her for like a strategy on how to get into the bathroom and then sit down like all the processes. She can't get it. I'm sure. Have you seen that? Because it's just shocking to me. And we'll see the caregiver go in there with her or she won't see that. Yeah. I do that my sister does that everybody does it. She means she can't do walk around. She can't she can't go to the bathroom by herself. She'll fall. Or she can't she doesn't have the strength. Now. It's weird, like the strength issue has become major. She's not shaking or anything, it doesn't look our concerns. It's just, she doesn't have the strength to pull her pants down and pull them back up to flush the toilet to turn around. Like all the things that you have to do have become really hard for her. So that is all assistant now. That is all assistant. And when you think about it, there's a lot of steps involved. Right? So yeah, memory loss. You can't remember all those steps. Yeah, to pull down your pants before you go to the bathroom and a lot of people with incontinence. They're already going to the bathroom by the time they're standing at the toilet. So yeah, that happens and it does happen. Yeah. And she actually is really affected by that. She doesn't like it. She doesn't like it when her diaper sweat. She doesn't like it when she has an accident.

Barbara Hament: 44:14

They're already having the either already peeing by the time they get to the bathroom. So oftentimes, yes. Just changing the depends when they get there. Because yeah, hold it. You know, and it's totally understandable.

Kim: 44:28

I think I think primarily what I'm trying to do right now with her and it's like just like a goal of mine. Getting my sister around is just to be kind. It is so hard to do this. And the phablets and giving her less information is sometimes better. Because she tends to beat on things right? For separation Barbara whole like Gosh, it doesn't stop. If you tell her one thing is going to happen. She per separates on it for ever and ever and ever and ever and ever. And we're like it just adds up. driving us mad. What I've been trying to do and trying to tell people who call her because they do try to her friends all still try to call her on the phone and just try to be listened to her more than do the talking. Because I think it's I think when she hears what other people are doing and how busy they are traveling and seeing everybody now that she doesn't see family, because actually, she's students more now that she's moved down here than she ever did before. But just maybe just listen to her talk instead of telling them about telling her about all their fabulous stuff they have going on. Because it's like cool. She gets it. She hears it. I mean, she's processing. Yes, she does. And even though she can't make maybe one time at attend, she can make a phone call or receive a FaceTime. She really can't do it anymore. It's very consistent one day she can next day she can primarily she can't anymore. And she just needs help with a lot of things. So that's why we hired another additional caregiver. And eventually she'll be in memory care. We're just trying to see when the right time is. And we're just thinking that right right now. It's not the right time. I hope we're right. I don't know. She fell. Last week. I got a call. I was driving my daughter to school, which is far away from here. So I was pretty far. And I was like, okay, and they were like well, we're gonna teach you bashed her head open. In the back. She's definitely got caught. There's definitely blood. She pushed her button. You know, the button that they were on the neck. She pushed her button, so that was good. She doesn't like pushing the button. So we were so happy that the system worked. And they put her in an ambulance. She went to the hospital and my sister and I met her there. We dealt with it. She's forced it three staples in her head. She was totally fine. CT scan was clear. Everything else was clear. no broken bones. Nothing else. I mean, we got so lucky. Wow. But then she went that route facility. Yeah. So they were great. They did a great job. And we were able to cover with some more hours with her caregiver and Kelton, my sister, and I've seen her more. So it's, it's good. It's scary, obviously, because she is. It is just fall risk. She's definitely a fall risk. But we're i She doesn't like it when I say this, what we're doing the best we can.

Barbara Hament: 47:05

You really do not want

Kim: 47:07

like it when we say when we talk like that. And when she complains about things to me, and I'll say, Mom, we're doing the best we can like nothing is perfect. She'll complain about the facility or somebody or whatever. And sometimes it doesn't even really exist. And I'll say things like, yeah, we're doing the best we can that I cannot say that to her.

Barbara Hament: 47:25

She doesn't say like your best is not enough. Is that what she's doing?

Kim: 47:30

Yeah. Is she basically saying like, well, you need to do better? Oh, yeah. I mean, she forgets that we have our lives and our kids and our husbands and our businesses. And we're busy. And of course does not mean we don't care about her. That does not mean we don't want to spend time with her. There is a level of like, we had to do what we had to do to take care of her. I don't really think she gets it. No, I think that's what that's what hurts me the most is she doesn't really understand what we had to do. We talk about her dementia, she sometimes wants to talk about it. She'll say like, well, you know, I can get better. And I'm like, yeah, like you can and you are in certain things in certain ways. You are being more social, you're getting out there, you're meeting friends, you're doing really well in your PT, whatever it is, we encourage her. She's like, well, I can get better. And then I can I can go back up north. And I'm like, Yeah, okay. Yeah. That she's not getting on an airplane? No, of course not. It was really hard to bring it down here. That airplane ride is difficult. Just the agitation level, and the crowds and the processes and she had to be in a wheelchair, and she just want to be in a wheelchair, all these things. It was not an easy trip, we're not going to be doing that again,

Barbara Hament: 48:49

you did the right thing.

Kim: 48:51

I don't think I had much of a choice. We just had to go into a mode of like, let's solve his problem. Because I had already even thought about it beforehand. Like I said, like I'd already looked around thinking that this might happen. Not this way. But something. So we were ready. We were ready. We were definitely ready for it. We just had no idea how hard it was gonna be. The caregiver manager told my mom all the time, like, I have to tell you, I don't have a lot of clients who move their mom to their neighborhood. You booked your mother to your neighborhood. Like, there's not a lot of kids who do that. I think that's pretty great. I think that's something that says something we should be proud and then we wanted to do that and do that for her.

Barbara Hament: 49:35

Absolutely, absolutely. And even if it doesn't look great to your neighborhood. So she's right there. Yeah, looter in a beautiful place.

Kim: 49:44

It's still it's not like we moved from a terrible place. Yeah, and it's right nearby. So

Barbara Hament: 49:48

you can swing by you can stop in and say hello, see how she's doing? You can drop in anytime you and your sister and your kids. I mean, ya know and to do and we do. Yeah, you can read dinners Exactly. And you know what memory care is not going anywhere. So they will be opening primary care again. And yeah, decided at some point, what I have found with clients is that when they're in the right level of care, they thrive. So even if she's the best person in memory care, she'll have all the attention of the staff. Because they'll love that she can do more things than the others can do. You'll bring her into, hey, why don't you come into the office and help us I'll make up a task for her. I never thought about that. We were just so worried to meet with people who were so worse was much worse than she was. And feeling really proud of it. Exactly. Like now looking around and feeling depressed, where you probably are aware that they're much more progressed than she is. I'm not sure. So I have a client in that situation. The staff loves her because she can help with the Christmas decorations around the unit. And she can help with the Easter decorations around the unit. She can help to all these collate papers or do whatever tasks they did they sit down and get out. They know that she can do it. Whereas the others, maybe there's one or two that can but she really can't. Yeah,

Kim: 51:11

I mean, you guys there, we'll make the decision exam. The good thing is that because she's already in that facility, it'll be very easy to just move her to another air, another wing, and the staff will know her. Yeah, yeah, everyone knows her there. And it's just a very different environment. And we think that at this point, there's just so much transition that she's had to go through. And I've got a we got some decisions to make on how much more transition we want put her through. She's hasn't been there very.

Barbara Hament: 51:39

No, she hasn't. Absolutely. And you'll see like, you're already saying, I get a lot of choices in assisted living, right? Like you sit down. And yes, you breakfast lunch and a lot of freedom menu. And most people with dementia can't, they can't order off a menu. And memory, we're at that point where you there's a lot of options with activities. Like if you don't have this activity or go to that activity, most people with dementia can't decide. They can't find each room is where what which activity is in what room. When you're in the memory unit, the activities just come to you. They're in one room, their theory choices, which is a good thing.

Kim: 52:14

I think our point was that she made some nice relationships with some of the caregivers on her floor. And this friend that she has across the hall and a couple other people. That would be like, just right now she might be on the cusp of needing it. Yes, yeah, we're gonna a little more time here and maybe see if she can thrive, like you said a little more before we go and move her again. Right, just a lot of ground. This is a person who never moved ever her whole life. At first. She stayed in the same house for the longest time. And then she moved like way later in life. And she still stayed in the same areas, you know, moving around thing, it's hard. I've moved like 100 times. She's like, she looks at me. And she's like, I can't believe how many times you and your husband moved and like, yeah, like it's, it's good. It's fun. I like to do it's not, that's not what she likes to do. So moving down here, even if it is near my sister, and I still has been Apolo to her, like she just cannot understand it. It's just so insane that she moved to the south. So I look at what a great life you're giving her honestly. She's so involved in lives is as much as she can be. she's there. She's physically there. Not always mentally there. She's there when men were like, Hey, mom, she's like, half asleep. We try we definitely try. I've noticed a lot like when she's around, I had teenage kids and my sister has younger kids like seven, four or five. And she she can't engage so much in group conversations. So I feel like she gets lost in all the chaos of the kids and the noise and everything. So I feel like it's better or low sometimes to be one on one with her than to even have her at these big family events. It's just like I just go over there I just like take her out by herself to go to lunch or whatever. Just something one on one. Whereas every time we bring in someone else, she just fades to the background. Yeah, I don't Yeah, yeah, she withdraws or maybe it's just for not being able to engage whatever it is. So I always feel like though even though those are great to be around well family and all I think some of it is better if it's just one on one in smaller groups or just actually two to

Barbara Hament: 54:30

three that's that's what we talked about in group like if you have someone else to talk to it takes the pressure off of her to keep the conversation going. Yeah, so she's just listening to your conversation and she's yawning and she's taking in that she may be

Kim: 54:43

following along a little better to be groups with the family gets to be noisy and chaotic. And maybe she's not following along. She doesn't have a hearing problem. But that's just it. Just Just Just look at her sometimes newly Oh, she really is she really benefiting from this Are we're not sure we're doing the best. You

Barbara Hament: 55:03

are. And you're doing great. You're doing great. Are you getting family pictures?

Kim: 55:08

Yeah, we're getting a lot of pictures. Yeah. Just trying to share with her as much as we can with that with and being kind, and just really trying to be aware of what is the best for her and how much information is the best for her. I went away on a trip to Europe for two weeks. And we decided not to tell her I was going. And I said to my sister, I said, Whenever it becomes appropriate, you tell her that I'm gone. Because I didn't want my my sister to have to deal with all of that per separating over me being so far away, because I knew she'd be worried and distressed about it. So I was like, You know what, just don't tell her. And then whenever it comes to the point where you have to tell her because she's so whatever upset about it, then go ahead and tell her. I think it lasted five days. But honestly, if I told her before, she'd be spinning, agitated, worried, trying to call me asking 1000s of questions, you know, that's my version of like a little niblet. Like this was just better for her to not share all this information, because I knew that she wouldn't be up not sad, but you know what I mean? Like maybe a little agitated and worried. Those are different things, different decisions we made to try to alleviate some of the pain that she has to go through. Because that's really what this is.

Barbara Hament: 56:24

Absolutely. And that's where you want. You just want her to be calm, reassured that as much as possible, as much as possible. Yes. So telling her that you're leaving for a big trip? As much as you want to guess what, Mom? I'm going where? Yeah, it doesn't. Yeah,

Kim: 56:39

it really doesn't. And it's sad, because that's, that's sad for me. I don't get to share that with her. When I got back. I definitely did. And she remembered when we went to Europe together. So like, that was good. She was a little mad at me for not telling her. But then she forgot it. So it really didn't matter. Exactly. We're figuring it out as we go along. Yeah. And you're doing a great job figuring it out. Really. Yeah. But listening to your show, and all the different types of people that you have on your show has been so helpful. People like me, and then spouses, and children, and then all the doctors, psychologists, the caregiver, people like all that was doing, it's been really helpful

Unknown: 57:17

to hear people's ideas are ended science behind all of this to fascinating. It's very sad, but it is fascinating. There are support groups, like you could go to an online signing zoom support group if you wanted to. Yeah, I

Kim: 57:31

definitely need to tap into one I asked really briefly the manager of the assisted living and she didn't she's like we used to have one and it ended. So I don't think there is a thriving part of it right now. Maybe where we are, but maybe I can find one otherwise, yeah. Maybe

Barbara Hament: 57:48

like the local Alzheimer's Association or Hilarity for Charity has Yeah, they have support groups. I'm sure. Yeah. If you want to a virtual support. Yeah. If you want to, there's no Yeah, I mean, you're doing a lot. You've got kids, you've got a big life businesses and sounds like I mean, you've got a lot going, you're doing the best you can, which is really good, better than most. So you're, you're navigating this and doing really an amazing pack Pyrmont. I hope you feel good about that. Like I hope it can take that I do

Kim: 58:20

at times. And like I said, I think really, I'm just really trying to be as kind to her as possible. As is so hard. We lose our patience. And she notices when I lose my patience. And she notices when the tone of my voice change. And it's like I like Mom, I'm just I'm really trying to like nerdy kids. And I'm like, oh my god, some of the things of her personality that I didn't love are really exacerbated in this dementia state. So it's all gone. Right? Sorry. It makes it harder. Yeah, definitely. Mortar. No, sir. We're getting along. It's fine. She'll, she'll be okay.

Barbara Hament: 59:00

And yeah, and you will be okay, too. Well, you're welcome to come back along the way. If you'd like to, I'd love to have the back. So nice to know you. And thank you for contacting me even Barbara, thank you for everything that you do. Oh, thank you. Absolutely. Happy to be here for you. So have a great day. And 10 here to remember that you can follow dementia discussions on Apple podcasts, Spotify, Google podcasts, and many more. If you listen on Apple podcasts, it would mean a lot if you would leave me a review. For any other information about this podcast please visit me at dementia discussions.net and please share this podcast with someone you know if you think it may help. Thanks again for listening. And I'll see you here again next time on dementia discussions.