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J Smiles chats with Kimberly Cooper, a sandwich generation wife determined to honor her mom's passion for independence even after dementia enters their lives.
Kim details her mom's stroke which nudged the cognitive decline. J is inspired by Kim's approach to caring for her mom: technology, rehab, independence and more.
As only the Parenting Up Podcast can deliver, the listener receives poignant tidbits, real life stories, tried and true solutions, humor and product suggestions.
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In the beginning, I noticed some short term memory loss. It was something that, you know, we noticed but didn't really think anything of it. She was getting older. But at that point, you know, my husband and I had started to prepare ourselves that, you know, it may be time for her to move in with us, it may be time for us to kind of think ahead about how we were going to manage arrangements. But then things just accelerated. She had a stroke, she had a stroke that accelerated the cognitive decline, just like that. I mean, one day she was coming back from Egypt. And the next day, you know, she was in the hospital, and at the time she couldn't speak she couldn't, you know, remember any of it.
J Smiles:Parenting Up- caregiving adventures with comedian J Smiles is the intense journey of unexpectedly being fully responsible for the well being of my mama. For almost a decade, I've been chipping away at the unknown, advocating for her, and pushing Alzheimer's awareness on anyone and anything with the heartbeat. Spoiler Alert- I started comedy because this stuff is heavy, be ready for the jokes. Caregiver newbies, OGs, village members trying to just prop up a caregiver, you are in the right place.
Zetty:Hi, this is Zetty. I hope you enjoy my daughter's podcast. Is that okay?
J Smiles:Today's episode, keeping mom independent, a conversation with Kimberly Cooper. Parenting up family. I cannot believe it. We are in for a super special treat. This episode, the one and only Kimberly Cooper is joining us. Hey, Kim, how are you doing?
Kim:Hi, Jay. How are you?
J Smiles:I'm so great, I'm so excited. Now family, you all know that I have a super affinity for Howard University. And for my soroars of Delta Sigma Theta Sorority Incorporated. And I'm gonna go ahead and tell y'all now so we can just get the cat out the bag, Kim happens to be one or both of those. All right, so we met at Howard, I am her Dean, I pledged her. But I want to get all super hokey and super emotional. But I will say, unfortunately, we are now sharing this space together. Where we are grown women who are caring for our mothers who now have a bit of decline earlier than anybody would have thought. Is that accurate Kim?
Kim:Very accurate. Yes.
J Smiles:And, you know, we're never ready for it, right? It doesn't. It's not like when you're pregnant. Okay, I've never been pregnant, but Imma just throw this out there. At least we're pregnancy is like what to do when you're expecting and that book has sold like 3 trillion copies. So if you get the book, not that they can prepare you for being a mother, but there are some things.
Kim:Right.
J Smiles:There's a baby shower, and you get a crib and there's some people to talk to. We don't have that. There is no book like that. Kim, tell us, what was it that led you know? Okay, this is not just regular aging. Mom didn't have a bad night's sleep. Something's going on.
Kim:So, well, first, it's, it's great to be here. And again, thank you, thank you, thank you for having me, it's so special to be on this program with you. And for me, with my mom, it's, I have it probably a different situation than most where, in the beginning, I noticed some short term memory loss. It was something that, you know, we noticed but didn't really think anything of it. She was getting older but at that point, you know, my husband and I had started to prepare ourselves that, you know, it may be time for her to move in with us, it may be time for us to kind of think ahead about how we were going to manage arrangements. But then things just accelerated, she had a stroke, she had a stroke that accelerated the cognitive decline, just like that. I mean, one day, she was coming back from Egypt. And the next day, you know, she was in the hospital. And at the time, she couldn't speak she couldn't, you know, remember anything. And so at that moment, I...
J Smiles:Whoa, first of all, this is you know, J Smiles just taken a moment of privilege. So mom was getting it in. Mom was in Egypt, so Okay.
Kim:Yes.
J Smiles:Now, not that any of this makes it any better or happy but I'm gonna just say I want, I hope that the universe in God and Buddha and Tao and everybody with some kind of power over my life is listening to say if you're going to take me out let me be coming back from Egypt or Bali, or something exciting. I don't want to just be coming out the toilet of my bedroom, you know what I mean? So.
Kim:You just describe my mom's personality to a T. She and after the stroke after she could talk, she went to she went to the holy lands. I mean, she does not want to stop for anything, even if she can't remember, you know where she is or where she's going.
J Smiles:OMG, after the stroke?
Kim:After the stroke.
J Smiles:She traveled to the Holy Land?
Kim:To the Holy Land.
J Smiles:Okay. And I must say, That's not like going to the Grand Canyon.
Kim:No.
J Smiles:Real talk. I mean, listen, I, I've never been to the Holy Land. Have you?
Kim:No. I couldn't make the trip, but I got some family members to go with her, yes.
J Smiles:I would love to go. But I think we also all know that the Holy Land, the area, it's not, at times, it may not be safe.
Kim:Right.
J Smiles:So for your mom, for her spirit to say, even after a stroke, I am going not just on a vacation, but are going a long way away to an area of the world that legit, at any point, it could pop off. You know what I mean? And with no warning, it could get stressful.
Kim:Right.
J Smiles:But she didn't care. She said, this is also on my bucket list and I'm out of here.
Kim:Yes.
J Smiles:Now with the stroke. With the stroke, let me ask you this with the stroke, how long did it take for her to recover?
Kim:So after the stroke, it probably took about, we're now in our little over three years post stroke. So it probably took her about almost two years to recover. What I had to realize is she wasn't going back to quote unquote, normal, the cognitive decline had accelerated, it was something that was probably going to happen anyway but the doctor said that the stroke just kind of set it in motion, but much faster. So it took her about two years to recover to a point where she had some things that were more independent. And her her personality is that you know, she still believes that she's going to see the rest of the world and we are trying to set it up to where she can in ways that we can manage, but sometimes she doesn't. You know, she's very stubborn. And she'll try to book herself for trips that I'm not aware of, and I have to find out and you know, help her understand that she's got to have support and help because of her for her memory loss and cognitive ability.
J Smiles:I gotta give mom some claps. Mom is laughing at y'all. Look she is laughing. She's like, listen, you have your plans, I have mine. She is booking her own trips are trying after the stroke. And after the Holy Land, she's still like, Listen, you're not gonna hold me down. I have things to do, miles to go before I sleep. Okay. Okay, well, let me ask you this Kim. Were the doctors able to actually quantify the change in her memory or the decline in her cognitive abilities? Or was it just noticeable to you or other family members?
Kim:They were able to quantify you know, they do this the studies where you know, like, she can't manage her own medication. So remembering what to take, why to take it, even remembering her condition. So when she goes to the doctor, she's like, what? I don't have diabetes. And I'm like, remember, Mom, we've discussed that you cannot eat that, because... who said I had diabetes? So her ability to hold on to information and remember it and then be able to kind of process certain things, but it's really interesting because the doctors, she processes things that she really is passionate about. She'll remember that she wants to go on a trip or like she was stuck on her driver's license. But to remember things that are are hard, you know, like her medical condition her medicines to remember, like her bill; so I manage all of her bills and everything and to remember what she spent or what she needs to spend. So the day to day life, I guess is what it's called, is very, very difficult for her.
J Smiles:Let me tell you if I had to forget a part. It seems like mom was winning. You know what I mean, just if you have to forget something. Okay. Let's remember that I'm supposed to go on an international cruise. And let's forget all about the bills. Who doesn't want to forget about the bills? I don't even want to pay the bills. I don't want to pay the bills now. And my memories, okay.
Kim:Right.
J Smiles:Now if you try to pay the bills, does it jaw her memory enough to say, Oh, yeah. Or she's like, I don't know what you're talking about?
Kim:Yeah, I don't know what you talked about, or, well, as long as everything's fine. If she'll go somewhere, walk outside the house, you know, we have to have cameras, and we have to make sure that she can get herself back. And so we have her, she has a watch and one of those GPS watches so that...
J Smiles:Yes.
Kim:We can always figure out where she's gone. So the day to day life of walking around the block and remembering like, oh, I thought it was this house. It's like, oh, no, I'm on the wrong street. So things like that, we definitely have to watch and manage. But again, and it's interesting, because like you said, remembering that I'm supposed to go on an international trip and oblivious to the fact that you know, there may be some challenges because of my condition is not her thing. She's like, I'm supposed to go and I'm gonna go no matter what.
J Smiles:Right? When one of my best friends, my mother does that a lot too. Zetty seems to not quite remember things like when it's time to go to bed, or the fact that she shouldn't be eating cake. She can't remember that. She definitely does not have Alzheimer's. According to my mother, no one has ever mentioned that to her. And if I say it, she tells me that is not true., JG. My mother calls me JG. My, one of my closest friends, she says, you know, I think your mom was playing you. I like I really think your mama's lying because she does know, to put on her red lipstick, whenever a man comes in the room. It's crazy, it's crazy, Kim, because I can walk into the room, you could walk in a room. Any woman can walk in, and she's gonna say, Hey, how you doing? No problem. A man, any man can walk in, and she is going over to her purse to put on her red lipstick. And so my friend is like see, see, she's tricking you know, some stuff. She remembers some stuff. And so maybe she's trying to like, but I can't prove when she is trying to play with so I guess got to go with it, right? I just gotta go with her flow, and just got to count it, and hope that God is going to give me credit for something that's not so good things I may have done in my life. For what I'm letting my mama get away with, you know what I mean? So let me ask you this question. When your mom initially had the stroke, did he make it all the way back to
Kim:Right. he United States? Are they part f it start happening while she as in Egypt? No, she made it all the way back. So she didn't have the stroke until she got back from Egypt.
J Smiles:Ok, that's good.
Kim:And what that's what we realized was happening is again, you know, we're probably in an earlier stage of this, then probably you and other families where we noticed something, but we didn't realize the impact of that short term memory loss in those early stages and medication management.
J Smiles:Okay.
Kim:So we, we assume, and what we think might have happened is, she forgot to refill prescriptions and so I didn't realize that some of her medications were out. And because she was fully independent, she was traveling the world at this point. So when she came back from Egypt, you know, she was with us. And all of a sudden, she had the stroke in our home, you know, my son found her and, you know, 911, we got her to the hospital, found out that she was having a stroke. Which before the stroke, my mom had been fairly healthy, you know, as healthy as you can be at her age, and, you know, with diabetes and high blood pressure and all of those, you know, conditions that, you know, I think our community tends to have.
J Smiles:But she was managing it. Right?
Kim:She was managing it. She worked out.
J Smiles:Right.
Kim:She was very fit. And so, you know, for me, the biggest thing on my radar was oh, she's starting, her memory starting to go a little bit, but I didn't have any of the other things on my radar that would cause a stroke. So I think that early memory loss also contributed to the fact that medication management is so important and it's something that was starting to slip. So when she got back, luckily, thank God, she got all the way back home. And it was within a week of getting back that she had the stroke and we realized that she hadn't been taking her medication.
J Smiles:Okay, so that could have induced some things. Yes. How old was your son when he called 911?
Kim:He this was about three years ago, so he was only seven.
J Smiles:Wow.
Kim:Yeah.
J Smiles:I hope he got to pick something out at the toy store or something like did he get a treat? Seriously, Kim, you're suppose to get a treat.
Kim:Yeah.
J Smiles:If you call 911 and keep it together? I don't know f all adults can keep it ogether if they see a loved o e, you know, collapsed and j st not looking well. Was had s e fainted or something?
Kim:She had felt lightheaded nd so she was laying on the
J Smiles:Right.
Kim:She wanted to just have a she called it her launching pad teps. And so you know, my son's ike, something's wrong with randma, something's wrong with randma. I was in the shower, so didn't even hear them. And hen he kind of screamed omething other Grandma, he went nd called 911. And then when I inally got down and I saw her o the steps, we just didn't k ow what happened. We were l ke, well, maybe her blood s gar. And yeah, it's just s mething that sudden happening w s was pretty difficult. But I t ink after that, then it was t e recovery phase, which was t e caregivers and not really k owing how much she was going t recover, and what recovery w s going to look like. And all o a sudden realizing that, you k ow, someone who was coming to l ve with us more so in p eparation, and you know, she w s going to help out with my s n and... to travel. And then being quickly thrust into full time caregiver with my son and my husband and my mom. That was pretty all in a week's time was was a bit crazy.
J Smiles:That's passed crazy. I mean, that's what you call a shit show, actually. I mean, that's what I would say I wasn't there with you. Well, that's absolutely a shit show. And I'm giving baby boy, some claps.
Kim:He is a pretty incredible kid.
J Smiles:Because at seven he calls for mom, she's not coming fast enough. I'm calling 911. That's pretty amazing. That's pretty amazing. So shout out for him. And then for it to turn so swiftly, like what you're saying, right? But obviously, that period of time, she was able to recover enough to walk and talk and travel to the Holy Land, which is fantastic. How long was that period was that like maybe six months or a year where she was recovering?
Kim:A little over a year...
J Smiles:Okay.
Kim:And almost two. And so where her stroke impacted was primarily cognitive, and primarily speech and cognitive. So thank God, she didn't actually have a lot of physical weakness. It was her eyesight, so she actually lost about 30 to 40% of her eyesight. And to the point where when a stroke happens, like half her eyes were blind. It looks like we finally figured out that like she could only see half out of each eye.
J Smiles:Ayy.
Kim:So that still hasn't fully fully recovered but it impacted like she couldn't remember words. She couldn't remember, you know, to eat. She couldn't remember, just all of a sudden we had caregivers coming. She needed 24 hour care. And I honestly thought, Okay, well, this is this is going to be our life.
J Smiles:This is it.
Kim:You know, this is it, but at the same time, I was like, the doctor said, well, there's a chance that some patients can recover. And when you tell me there's a chance, you know, that's all I needed to hear.
J Smiles:You put your cape on.
Kim:And I was, I mean, I made her do exercises and, you know, therapists came and I wouldn't let her get out of the therapy. And you know, we, we worked on it and worked on it. And of course, you know, albeit to God, she got some of that, you know, her speech back, now she still miss forgets a lot of words, and she can't, you know, we always finish sentences and things like that, but to the point where you know, she can prepare a meal for herself. Now I have to make sure she's got the food and everything, but she can prepare a meal for herself. She can dress herself, she can know...
J Smiles:Okay, one thing. When you say prepare a meal. Is this hot food? Can she make hot food?
Kim:She can make hot food.
J Smiles:So Wow, that is extraordinary to go from what you described, to the fact that she can manage, say, a stove or an oven or even a microwave for that matter.
Kim:Right.
J Smiles:But prepare hot food. That's...
Kim:Yeah. See fired her caregivers because...
J Smiles:Okay, well, so.
Kim:Every time as she started to learn to speak again, she would fire every single one. And she didn't like their cooking. And so I said, well, you have to demonstrate that you can cook or you know, you have to keep the caregiver so it finally got to the point where she kept firing them that.
J Smiles:Okay, okay, but okay, truth, though. Did you taste the food? Was it bad?
Kim:I mean, it was bad, but she can't have salt or sugar.
J Smiles:Okay. I mean.
Kim:She's like, I don't have diabetes. I'm like, Yes you do
J Smiles:Yes, you do. She's like, nobody ever told me that. You're making it up.
Kim:You never told me that.
J Smiles:You're making it up. And this is too much already. You know, I'm already stuck in the house. By now. I'm supposed to be in China or Argentina or whatever. Her next trip was.
Kim:Right.
J Smiles:I'm not going to allow you to dictate but so much because you are the daughter does she ever hit you with?
Kim:Exactly. Yes.
J Smiles:Because I'm still the Mama, I am the mama. You know?
Kim:Right.
J Smiles:Don't don't get too big for your britches, or some version of that saying, Oh, man.
Kim:Right?
J Smiles:Well, once she started to improve, what did the doctor say? Around, okay, We, we, you know, how do they let you know or when did they let you know this is probably it? She's probably not going to improve further than this. She was continuing to improve, but at some point, they likely called it and said, Hey, honey, this is the best your miracle is going to grow. Your miracle plan has now stopped.
Kim:Right? And that was I think her, she's 79. So...
J Smiles:Okay.
Kim:Her age. They, They say the chemo. It's interesting, because they don't they haven't given her Alzheimer's, an Alzheimer's diagnosis, they've given her a dementia.
J Smiles:Okay.
Kim:And cognitive decline.
J Smiles:Okay, so they haven't put it in a specific disease category.
Kim:Right.
J Smiles:They just have put it under the umbrella of all of the major. And I like to make sure that I point that out to anyone who may be new to the Parenting Up family, but something that it's very easy for anyone to clump them all together. But dementia actually is not a disease. It is the umbrella of anything neurological, that has a component of cognitive decline. So Alzheimer's, Lewy body dementia, Parkinson's, even down syndrome, and there are probably three or four more that I'm unable to recall right now that are under dementia. But there are times when a clear idea of which disease is there doesn't really show up. So they just may have that an individual has dementia, which is the case with your mom.
Kim:Right? They monitor and they look at the cognitive decline. And you know, of course, you Google. And so when I realized that her age, and some of the dementia was working against some of the brain recovery that happens after a stroke.
J Smiles:Uh huh.
Kim:Then I said, well, can we give her some medication? Isn't there something that can like reverse this cognitive decline? And the doctors basically said no, that based on what her condition was, they didn't feel that the medication would be better for her versus the other 20 medications that she was already taking.
J Smiles:Right.
Kim:And they just didn't think that it was going to really help her. The goal is to kind of give her as good of a life as she can. And they felt that that medication wasn't going to contribute to that.
J Smiles:A few minutes ago, you said chemo. Did I hear that?
Kim:Yes. She is a breast cancer survivor. And so yeah.
J Smiles:Well, yay.
Kim:Which is amazing.
J Smiles:Yes, ok. We claps. We celebrate, every time we can
Kim:Yes. And that, that is a blessing. So she's been years hear the Parenting Up podcast. and years and years breast cancer survivor, but the chemo is known to have impact on short term memory. And especially when you have to continue to take kind of radiation pill that she was taking for several years, that can cause some cognitive decline. But on top of the stroke, and on top of kind of the what was already starting as dementia that just continued and they just keep saying the word accelerate.
J Smiles:Okay.
Kim:For me, that's a little scary, because I'm like, well, how fast and how far and how long is this acceleration going to happen? But I noticed that there's points where things will stabilize, you know, and then we'll discover something new, you know, I try to, to monitor and kind of understand what is she struggling with? What are some things that are coming more difficult for her and then I try to find some type of either technology or some type of solution that maintains her independence as best we can. She is extreme. I mean, she raised me to be extremely independent, and she...
J Smiles:And you are
Kim:I am and to see it in her as having to, to help her and care for her. It's so, she's so passionate about it, that it breaks her spirit when she can't be independent. And so, you know, my mission and my goal is is knowing how important that is to her that I try everything I possibly can to give her that independence. And even if I'm kind of the hamster wheel in the background...
J Smiles:Right.
Kim:And she can't know that I'm the hamster wheel in the background.
J Smiles:Yes.
Kim:I tried to make her feel as empowered and as independent as possible.
J Smiles:That's beautiful. What technology have you found that is assisted you in giving her that independence, even if it's a bit of an illusion, but something that allows her to walk a little more assured a little more confidence throughout her day?
Kim:So the biggest technology that has been huge for our family is the Alexa.
J Smiles:Okay.
Kim:And Alexa, and Alexa is going to talk to me, but she is, sorry.
J Smiles:That's hilarious.
Kim:Alexa off. Okay, she's off. So the device that will go nameless.
J Smiles:Right? Alexa wants some shine, she'd like a put me in the podcast.
Kim:Right. But we have that in, you know, every room in her. We have a mother in law apartment in our basement, which...
J Smiles:Okay.
Kim:Fortunate that we've had that. And so we have a device in every single room. And I use it to do queues. And so what we realize is that right now she's at a level where queues will actually help. And, you know, that is a blessing that she can take cues and actually use those cues to kind of recall what it is that she needs to do. So I use the cues for medication.
J Smiles:Okay.
Kim:Medication management. So I lay out all the medication into separate containers, and this taken a lot to find the right container. But for each day, she has to take medicine three times a day. So each day has its own medicine container. And it'll remind her when to take it.
J Smiles:Ok pause.So it's a different container. So it's not the pill minder, where it's all in one large container, you have three separate little seven separate ones, or 21 separate ones.
Kim:Yep. And part of that is because that also gave her a sense of independence, she can just grab the daily container and keep it with her put it in her purse. So in case she needs to go somewhere, she has all of her medicine.
J Smiles:Because you never know honey.
Kim:You never know.
J Smiles:She might be meeting someone for lunch or going for a walk, we don't know.
Kim:Right, exactly.
J Smiles:Or going look going to the airport to book her flight.
Kim:Right. So you always have to have it on the go. And it reminds of when's the time to take medicine, it allows me to drop in. So, I have it set up from my phone, I can actually just drop into any of the rooms and say, hey, how's it going? Have you eaten? How are you feeling? Have you taken your medicine? So it allows me to kind of check in without her having to know how to answer the phone. What she forgets and says I haven't told her how to answer the phone. It also gives us...
J Smiles:I have to love how she softly refuses to accept any participation.
Kim:Right.
J Smiles:In the decline. She's like, it's not me.
Kim:No.
J Smiles:It is also never my mom. Whatever happened? It wasn't her.
Kim:No, never. You didn't tell me? Or you didn't show me?
J Smiles:No one has ever shown me. I didn't do that. I don't even eat eggs. I'm like you just ate a dozen yesterday. Okay, fantastic. So you've been using Alexa to do that. So do you also have Alexa just set up to say at 10am? Alexa will just say take your morning medicine?
Kim:Yes, absolutely. That 9am 3pm, nine o'clock at night. And it is it is great. Any type of reminders you can put on there.
J Smiles:Wow.
Kim:And they'll send reminders directly and it's in every room. So that way, if she's moving around the house..
J Smiles:It don't matter.
Kim:She can hear it. And then you can drop in, which basically means you can come into the room on video without anyone having to answer the phone.
J Smiles:Okay.
Kim:Which is key. So you don't have to wait for them to answer just in case something is happening, you can actually show up my face just shows up on the camera by your bedside. I'm like hey, how's it going? So that's been really helpful. And then we have the other technology we have is which my son has and my mom has, and they have them both in different colors. It's a GPS watch, not an Apple Watch, which is a little bit more complicated. But it's a GPS watch that allows you to track where they are. And then also you can drop it. So again, you don't have to answer the phone, I can just drop into the watch and say, hey, what street are you on? And she just has to answer. So we try to use a lot of voice activated tools. We change all the locks in our home. And my husband put locks on our home that are combination.
J Smiles:Okay.
Kim:Which worked at first, but then she would say we didn't tell her the combination.
J Smiles:Absolutely. And I don't know why you would do that. That's awful of you.
Kim:Right. So now he can automatically unlock and lock the locks and he can we have cameras so we can see her if she's gone for her walk. And she's at the door and maybe you know, we're in somewhere else in the house he can unlock the door.
J Smiles:As soon as she's walking up, just unlock the damn door.
Kim:Yep, just unlock the door.
J Smiles:How simple is that? Have a mercy? Can we take a moment of silence? Who thought of that you or your husband? Look, Let's just..
Kim:My husband....I mean, my husband's thought of that.
J Smiles:Okay, cuz I want, okay, hold on wait. I need you to pass on to him that he got his own set of cheers, because that's a big deal. She's going out for a walk, she just comes and we're just when rather than somebody has to go where she thinks, Oh, I'm gonna have to let you know when I come back. I'm not a child. I can go and come whenever I want. But we know we can't give you a key because you might lose the key. You cannot recall the number letter combination. But what we can do is just look through this video. And magically, the door's unlocked.
Kim:Exactly.
J Smiles:Oh, honey. I love it when technology allows us to use it in ways that are even outside of the parameters of which it was originally designed. You know, I don't know the designers of the security and the security cameras and the Wi Fi Bluetooth type locking systems, but I'm pretty sure because they have nobody's ever really planned stuff for cognitive decline in the elderly. Nobody I wish they did because I would go to that .com and just buy everything on it. Most of the time, it's like, oh, that is for the very busy working family who says oh, I don't know, if I locked the door. I'm not sure if I locked it, or I didn't like it. Or I don't want to give my son a key and he has basketball practice. And the coach is going to drop him off and I'm going to unlock you know what I mean. But you all are using that product to work for mom. And it's amazing. I love it.
Kim:Yeah.
J Smiles:I love it.
Kim:Thank you. It's been. And it's also from a safety standpoint, too. Because there's a door in her home, that's the back door. And sometimes she would open the door to get fresh air and forget to close the door to.
J Smiles:Ah.
Kim:And she's like I didn't open the door. Somebody must have broke into the house. And so of course we're like, oh crap, just someone break into the house?
J Smiles:Correct?
Kim:She forgot that she opened the door. So now, but we can see if the door is ajar. And if we need to close it and if we need to, you know, just remind her so it's it's been safety and independence and for us peace of mind as well.
J Smiles:Mom got you calling 911 in the share of the neighborhood watch. Like, we walk around with billy clubs and guns somebody is going to jail is like mom, really? Can you just close the door? You might, you might get somebody shot up in here, it's 10 times around here, it's 10 times. Okay. Do you recall the brand of the watch that your mom and your son have?
Kim:Yes. It's called a Gizmo and you can get it from Verizon.
J Smiles:Absolutely. That's what my mom had.
Kim:Oh.
J Smiles:Her Alzheimer's is advanced past using it. But we probably use it for about a year. It was fantastic. I have to tell you, it was so rewarding for her. And I actually have an episode about it. It hit very hard. And she she let me have it. She cussed me out in her own very special way. When she told me that she needed a cell phone, and that she was disgusted that she had to ask people to call me. She looked at me and she said, well, how do you think I feel having to ask someone else to call my child? And I was like, oh, I'm looking around like. I hadn't thought about that. So to the point you're speaking of around independence, and some sense of, I'm still in charge and in control of my person, my thoughts, my desires, comings and goings, and I still have my same place in this family, I'm the mother. Now she didn't remember any of the caregivers name. Most of the times she would say, what's her face? I'm not about to ask what's-her-face to call my child? And I was like, good damn point. You actually, you know what, mom? You're right. When I thought about you shouldn't have to ask what's-her-face to call your child, but I was thinking, I now have to find a solution. And my solution was the gizmo and she would just pick it up and call me, it worked. There was several times I was out of the country, out the thing would ring, honey, at 430 in the morning, and I'm, you know, with for the sake of the podcast, this is a family friendly podcast, I would just say whom I was traveling with whomever, right? And then I would just say, hey, listen, honey, if this rings and it says mama, I gotta answer, Okay? I don't care what's happening and what we doing. I have to answer it and she's going to rattle on about absolutely nothing. And we got, I gotta rattle on with her, for two minutes or 20 hours, whichever way it goes. So cool. The Gizmo absolutely...
Kim:The Gizmo was really, really been a god send.
J Smiles:Does she use it?
Kim:When she remembers to take it, so we try to just remind her when she's gonna go outside to take it with her and she'll remember it. She doesn't know how to use it, but the good thing is they got the drop in, so she can drop in.
J Smiles:You like I don't really care if she used it, I just need to know where she is. And where I can drop in. Got it.
Kim:She's probably not as concerned about calling me because again, she's independent. So she's like, I'll see you when I see you.
J Smiles:Right? She doesn't need you. She doesn't need you at all.
Kim:No.
J Smiles:Do you all have caregivers now?
Kim:We don't. So we, after she fired the last caregiver, we had a heart to heart because this particular caregiver, I really liked because she would take her, you know, out to do pottery and to do you know, all these different things. And my mom just got to the point, she goes, I don't really feel like being bothered with them, I want to do my thing. And so I said, Okay, well, here's what we're going to have to do, we're going to have to maintain your medicine, you can't just sit down all day, you know, there have to be activities. And, and so you know, she created her own schedule. And you know, this, the doctor said the schedule was, was fine. And she's been maintaining her own schedule. Now, my husband is home during the day, this was before the pandemic, he was home during the day. And then of course, we're all here in the evening. So in the evening was more when we would be able to kind of have family time and check on her. But she does her thing during the day. And it's exactly what she wants to do. And she's a little bit of a loner.
J Smiles:Okay.
Kim:So she doesn't like to be bothered with, you know, strangers in her space, basically.
J Smiles:Wow, you are really going down a path less traveled as a caregiver of a parent who's living with you. I haven't heard a ton of stories where the caregiver is really telling the parent, Okay, you know what, we'll see, you would prefer A, I'm going to try A and we'll see now if you mess up, we're going to do it my way. But I'm going to really we're going to try. So you don't want the caregiver because they're in your space, I get it. Okay, mom, you are a little more of a loner, you really want to be, do your own thing. It just so happens that your husband is home during the day, the entire family's home in the evening. Let's see. Many people really don't have that level of patience and faith after something as unsettling as the stroke, the cognitive decline, the necessary caregivers, rehabilitation, things of that nature, in the fact that she's lost a lot of her memory and her recall, and portions of her speech. There are a lot of people that I've talked to in your situation, that will just, they have gone into autopilot and saying, hey, these things have happened. And I now have to make decisions. She may not want to, but she needs to. And I have to go back out into the workplace. And I need to be assured that while I'm at work in doing whatever in the world, that nothing is happening at home with mom and the only way I can be assured is that if there's somebody here watching her, so she may not want to have a caregiver but dammit she's gonna have to have one. And they might, you know, it would be a little more push and pull and anxiety and trepidation. So kudos to you. But I mean that kudos to you for saying okay, you know, really recognizing your mom's personality, her basic personality, in her healthiest being and even though that has been reduced, like you know what? Okay, all right, let's see, we're gonna make these adjustments to the house. And I'm gonna do my damn best to be the hamster wheel behind you. Run for it, baby, live your best life. That's, that's remarkable. You are part of the sandwich generation. You have said a few things about your son. So how old is he now?
Kim:He's 10. He just turned 10 in November.
J Smiles:So you are right there in it. So the sandwich generation is when you are caring for a parent, and you have a child. So they're the bread. And you're the meat, or the jelly? Or the cheese, whatever you want to call it. And you also work?
Kim:Yes. Yep.
J Smiles:Outside of the house.
Kim:Yes.
J Smiles:And you travel for work. I mean...
Kim:I did.
J Smiles:This is a leading this is a these are leading questions
Kim:I've been so blessed to have my husband. And even before because I know your life, but other people don't. But right yo did you did before the worl shut down. When your mom' my mom's decline, you know, we had my son. And my job has condition started to unravel Your job still required you t travel? How did you manage that Did you take FMLA for a perio of time? Or did you manag things remotely always been really demanding. And we even lived in Switzerland for a couple of years. And when we had to move to Switzerland, we didn't have to, but it was a discussion that my husband and I had that said, you know, one of our careers is probably going to have to take a backseat at times in our lives. Because when we went to Switzerland, you know, he's a camera operator, he wasn't able to do camera in Switzerland, one because it was Switzerland, he doesn't speak French, two, because we happen to move with a three month old baby. So that was the first moment when we realize that you know, we're going to have to be a team and on this team, we're not going to always have the traditional roles that people would expect. And there was going to be times when you know, he's going to be the one that really is able to be physically there. And so we were used to that kind of ebb and flow. When I had to move to Virginia from California, which we just moved to Virginia about three years ago, we had the same discussion, like, Okay, this is an opportunity, you know, he was working in LA, as camera operator moving to Virginia, again, was going to be an uproot and a challenge for him to continue. And we moved my mom as well. And, you know, we again, started to see the cognitive decline. So we knew that we'd need for my son to adjust to moving with my mom coming to live with us, we knew that I would need him to really be home and to be able to kind of take on more with both of them.
J Smiles:Okay.
Kim:I think as a sandwich generation, having a husband who's been able to, there's times when he takes her to the doctor, and I do something with my son, but I've continued to work I have to, and we rely a lot of times on, you know, me working full time him doing more contractor freelance type work, so that he can be there for taking my mom somewhere or taking my son somewhere. And then when I can take time off, I'll take time off and let him go do something. So we kind of manage that way, knowing that one of us has a very flexible job versus the other.
J Smiles:So you all have a triple decker sandwich with three pieces of bread. Three pieces of bread is a lot of sandwich and a lot, lots of to bite and chew on. That is a very heart warming story that you just shared. And I can imagine that there will be quite a few people in the Parenting Up family that will benefit from hearing how you and your husband attacked life, which is what it sounds like to me from the beginning before there was a crisis. And that's so much about the purpose of the parenting up podcast is to say, hey, if your family member has something under the umbrella of dementia, unfortunately, you're on this road and these things are going to happen. Start preparing, don't wait, do not say, oh, let me just hold on. Maybe it won't happen. No, go ahead and do all that you can and it seems like from what you're saying, you and your husband just naturally have managed your life in that manner. saying, okay, how are we going to prepare and handle career and parenthood?
Kim:Right.
J Smiles:So now his career is parenthood, parent up, and parent down?
Kim:Yeah.
J Smiles:That is promising. That's very promising, as a as a new way to look at having it all. So theoretically, you all do have it all in what that concept generically means. Not to say that it's easy, but you have two individuals who are working, and your mom is with you. And you all have a son. So the point is, there was nothing in life that you all just categorically said, hell no, we're not even trying that. Y'all threw everything in the air, we know what we're gonna, we're gonna make a run for it. We're gonna try. We're gonna try all of it. And we'll figure it out as we're going along. And that's, it takes a lot of guts and a lot of gumption. So congratulations, for figuring it out and for pivoting, all along the way. That's cool. That's very cool.
Kim:Thank you. Thank you. And I think that's the word pivot is probably something that, for me is just, you know, life is a bunch of pivots. And I think when we first got married, was that what my expectation was, is that, you know, I will be the primary breadwinner, we'd have, you know, my mom living with us and our son, and we'd be moving for work at different times, it wasn't necessarily the thing that you think is like, Oh, this is going to be our, you know, dream life. But at the same time, as these things happen in your life, and these pivots happen, you get to a new normal, and you realize that, oh, okay, this is doable. We're still having fun, we're still traveling. We just bring everybody with us.
J Smiles:Right.
Kim:And we make accommodations, you know, we get sweets, we do certain things to make accommodation, you realize that, once you get over that this isn't what I planned. Initially, this isn't what I do have is actually pretty, pretty cool.
J Smiles:There was a little bit of a pause. So I would like you to just I was really, I don't know what that was, I would just I don't know what that was either. Doesn't matter. So I just want you to start, just start again and say, the part about where you didn't plan it. But when you look over it, the pivot part started to pivot. How pivoting is about like...
Kim:Pivoting is really a key part of as has been a key part of our lives. As we started out, you know, we didn't expect that this is where we would be that we'd be, you know, I will be the primary breadwinner and we'd be living with my mom and my son that we'd be moving occasionally for my job. But as we made those pivots, and as different things happened in our lives, we realized that that new normal, whatever that was, was actually still pretty darn cool. And we were still together, we were still you know, we were still doing fairly well. And even though it wasn't what we expected, what we got was something that we still enjoyed, and we just make accommodations and we remain agile. And I think that's going to be key is I want to commit to being with my family and taking care of my mom, you got to stay agile. And I think that's something that we've been we've been pretty successful at.
J Smiles:That's huge. Staying agile. That is so huge. Sticking to a plan can cause a lot of pain. Lots of lots of pain. As I recall. Your mom was moving with you prior to the stroke.
Kim:Yes.
J Smiles:Was she moving from California to Virginia?
Kim:Yes.
J Smiles:Obviously she agreed to it.
Kim:Yes.
J Smiles:Which is awesome. So then you didn't really have to
Kim:Well, you have to hear why she agreed to it. go through the whole pushback fight, I'm not leaving California. What are you doing? I'm not coming out late to the east coast, that's cool.
J Smiles:Okay.
Kim:This is the hamster wheel.
J Smiles:Okay.
Kim:So for the stroke, we noticed some cognitive decline. And we knew, you know, there was no way I was leaving my mom in California, my father passed when I was young. I'm not an only child, I love my brother to death. He's not the most responsible and he would not be the caregiver. And he can admit that, you know, most of my mom's family is older. So I wasn't leaving her in California without me being able to be there for her. So the way we convinced her to move is one my son, that's the benefit of the sandwich generation, she didn't want to be away from him either.
J Smiles:Right?
Kim:And we said that we needed help with our son.
J Smiles:Okay.
Kim:That, you know, we needed someone to be there, we didn't really have any family in the area. And so we would need her to help him, you know, with homework and to help him you know, when she could, and also it will be a great launching point for her to travel, to save money. You know, because she did like three to four trips a year prior to the stroke, so and she would always be saving up and paying on some trip. So this would allow her to save a bunch of money.
J Smiles:But that's true.
Kim:Take more trips, which was genuinely true. We didn't necessarily need her help with our son but, but it was gonna be nice for her to be around. And to you know, she could pick them up and things that just got them closer. And so she was all gung ho for moving because it's it, you know, we bought a house that had a mother in law suite in the basement. So we made plans that she was going to be with us. And we said the least this way, she can still be independent. But when she's not, you know, she'll be here.
J Smiles:That's another example of how you and your husband didn't wait for the calamity to occur. Having that level of foresight is good through out being a caregiver, I think it's even more important once you become a caregiver. Because what happens is so random to those of us who don't understand medicine, and can be so rapid that having a very agile approach to life, and being on the trajectory of Listen, this is how we live in our family. We pivot, we put family first, and we figure it out. And it seemed like that's kind of what y'all have been doing since you got married.
Kim:Yep, that's been our philosophy is not always easy.
J Smiles:Well, no, hell no. Don't nobody said nothing about easy. I don't think. What the hell? I don't know what's easy then I don't know. Yeah, what, there's a child and a parent that requires care any version of easy is over. If there was some easy before, it is absolutely over now. For anyone who is new to caregiving. What is something that you know now, and you do it without even thinking about it, that you wish you had known toward the beginning of your journey as a caregiver?
Kim:That's a really good question. I think the thing that I know now that I wish I had known then was to not underestimate the ability for kids to feel and to know what's going on. And so I think I tried to shield my son, you know, before stroke, my mom did have my son a couple of days a week because she was a teacher for over 35 years and she was a reading specialist. So she would take him, you know, to spend time with her grandson when he had half day kindergarten, and she would teach him the other half of the day. And she was a phenomenal teacher, he was reading, you know, before he even got to preschool.
J Smiles:Wow.
Kim:So they were close already. And I think after the stroke, I tried to pretend like oh, you know, try to hide it from him, or you know, not let him really see the extent of everything. I remember one day he, he had already looked it up he had already.
J Smiles:Oh my goodness, really?
Kim:Googled this. And he was just like, well, Mom, have you thought about this for grandma? And do you think this for grandma? And, you know, all this time, I'm...
J Smiles:He is given a second opinion.
Kim:Right? And so now we include him in the discussions about Grandma, we include him in talking to her so it doesn't feel so scary and so that she doesn't feel so different. And you know, we explained to him and he looked, he's very savvy at looking it up. And we carve out time for us to kind of do things together. So we have Friday Movie Night, and I started this, we've always, my son and I and our in my husband, we've always had movie night on Friday nights, we watch movies, we make popcorn. And as my mom came into our home, you know, we invited her to be parts of Movie Night and to come into movie night and she gets to pick a movie some nights and he gets to pick a movie. And you know, when she says, oh, I've never heard of this movie, and we may have watched that movie, like a month ago, helping him understand in in a way that he embraces it and he loves her for it. And you know, he will answer a question like 10 times. I'm like, at five, I'm at my max. He'll do he'll keep answering the question with no change in tone. And I'm working on that.
J Smiles:Right. Right. I love it.
Kim:Because my tone will start to change.
J Smiles:I love it. He is on message he's on message Right.
Kim:He is on message. So I think getting your child I mean, she knew everything. involved, especially even if they're younger, helping them understand. In my husband, I've taught our son tolerance and acceptance. The kid who's sitting by themselves at the lunch table, being that frien that comes over so we've taugh him that with other children, t teach them that empathy, tha compassion for his own Grandma who he used to see as like the knew everything under the su and she did.
J Smiles:Right
Kim:And to have him have to shift that perspective was tough. But you know, we talked about it now but we should have talked about it, you know, from that first day so he wouldn't be so afraid and worried and so that she wouldn't feel like he was pulling back.
J Smiles:Gotcha, I understand that is fantastic advice. Thank you so much. What do you do for self care?
Kim:To be honest, I would say..
J Smiles:Yes, please be honest.
Kim:After my mom's stroke, self care was terrible. I gained a significant amount of weight, significant to the point, you know, the type of weight where you got to go to another store, type of weight. That many sizes, but more importantly...
J Smiles:Okay, that's not, I mean, the situation isn't funny, but the concept is. Where you have to leave the store. That's funny. That's a J Smiles approved comment, thank you very much. But it's not so much the size, it was, it was the fact that I just wasn't taking, I wasn't sleeping, I wasn't eating properly, I wasn't exercising, and I was trying to maintain a level of work that was as if nothing was going on at home. So it was pretty bad. I felt like my health was being in jeopardy. Like, I felt like, you know, my blood pressure was going up, things that just were never part of who I was. Because I normally tried to, you know, maintain some level of eating well, and doing different things to try to take care of myself, it got to a point where I just pretty much hit a brick wall. My work was just over stressful and I ended up leaving the company because the company wasn't as supportive and I didn't feel that I was heading in the direction that I wanted to. I didn't take that time you mentioned like, oh, you know, did you take? I didn't take that time after the stroke. It took me a while to really process what was happening. And so I ended up leaving the company. I made a commitment that I have to get myself together. So I got a peloton. Okay.
Kim:Which has been a godsend. I started to just think about sleep as being a necessity, forcing myself to sleep an appropriate amount of time. Setting up time for me to do my peloton in the morning. Setting up time for me to take walks with my son most of the time when he doesn't feel like going, I still take them.
J Smiles:I don't know if that's fine. I don't know if that's fair. You said it real smooth and sweet. Most of the time, if he doesn't feel like going, I still take him. You put a little mama sweetheart on it. It took me a minute for it. I'm like, wait a minute, I think that, wait a minute. I don't know. I don't know if I agree with that statement. Okay, go ahead.
Kim:And then I started doing some creative things. So I started making candles, I started...
J Smiles:Wow.
Kim:Just doing different things that were kind of creative expressions. And I started really thinking about knowing that my, again, the pivot, knowing that my situation was going to be different. What did I want to do with my career and knowing that I'm the primary breadwinner, I was, like, I gotta figure this out pretty quickly. And I moved jobs to a new company that was in a role that was its, I was super excited about it fit what I was looking for in my personal lives, the values that I have, the company was extremely supportive, and allowed me to travel which we all love to do. So now...
J Smiles:Yes.
Kim:We're going to travel together. So when I moved jobs, I said, you know, I'm going to maintain this this level of self care, I cannot let it go, no matter what because if you don't have your mask on first, in terms of well, now your mask as well as your oxygen mask.
J Smiles:Right.
Kim:That you have to take care of yourself first in order to take care of someone else. And I didn't have that it wasn't ingrained in me. When things first happened with her I think I felt like elastigirl and I felt guilty if I wasn't constantly trying to do something to change her situation. Finally, when I realized that if I'm not here, this whole ecosystem
J Smiles:Is a wrap.
Kim:Is disrupted.
J Smiles:It's a wrap husband, son, mom, it's a wrap.
Kim:It's it would be it would have been really difficult.
J Smiles:I would have been sad, too. i'm not I would not be prepared for that phone call that takes up like what, Kim What? Like No, absolutely not. No, ma'am.
Kim:Yeah.
J Smiles:Absolutely not.
Kim:So but I mean, honestly, having that discipline. I lost over 50 pounds.
J Smiles:Whoa, wait, hold on. That takes a lot of Cheers.
Kim:Thank you.
J Smiles:And that's a lot of discipline and you were working and you that doing the whole sandwich generation thing. That's a hell lot of discipline.
Kim:It makes such a huge difference in how I felt and my health. And then when the pandemic struck, I already had that routine. So I just kept it going and continued to kind of build strength and its been emotionally a huge benefit to because I didn't, I forgot, you know, from my younger years, I forgot how much working out can clear your head can make you feel stronger and quite, you know, just more level headed. And I think those endorphins and things I was missing for so long from working out that I think it just bounced out everything else that that I was doing in, in my self care.
J Smiles:Wow. I love it. I love it. Thank you so much. I don't know. I mean, that sounds like a wrap. That's you put a perfect bow on that. I'm not going to ask another question, I don't what, I'm not about to mess up that ending. Like if this was a television show or movie, it would have the cute little heart that comes around and then they type the end in the middle with a cute little song. I probably messed that up. I am so grateful that you took the time to share with us, that you were so transparent, and so honest, I know you well enough to know that giving this level of detail and depth about your mom is not something that you do every day. And it's not necessarily the most comfortable thing. So I take it with great pride and we will treat it with great care here the Parenting Up family, we're going to keep pushing for awareness for this horrible slate of diseases that are under the umbrella of dementia. And along the way until we get the cure to keep property each other up and have a few laughs as we do it.
Kim:Yes.
J Smiles:Absolutely. I love you.
Kim:Love you too. Thank you for having me.
J Smiles:Of course, you're welcome to come back anytime.
Kim:Thank you.
J Smiles:All right. Bye bye.
The snuggle up:Number one- Spy on your ello's medication. Don't ask them if they're taking their medication properly. Sniff around, are they taking the proper medication every day? The right number of pills, the right time of day. That is the quickest way to find out if there's some amount of cognitive decline. Number two- Use technology to your benefit: voice activated, motion sensor. It might not have been designed or invented for dementia but it might be exactly what you need. Just stop, pause, think about what it would take to make your ello's daily life easier. I bet you there is some type of device that already exists. Number three- Honor the spirit and underlying personality of your ello as best you can. If they're independent or very soft spirited, do all you can to organize their life, their activities, their environment around that. It really will make a difference. Number four- Join me every Monday night for a video broadcast, a vodcast, it's a video podcast. It's all about caregiving, but a completely different topic than we have here. Same title, Parenting Up in partnership with getvokal.com. Follow us on social media, Parenting Up has a presence on YouTube, Facebook and Instagram with unique caregiving content. That's it for now. Thank you for listening. Please subscribe for continuous caregiving tips, tricks, trends, and truth. Pretty Pretty please with sugar on top, share and review it too. I'm a comedian, Alzheimers is heavy, but we ain't got to be.
