Creating Systems, Routines, and Success as a Caregiver with Patti LaFleur

Join Kosta and his guest: Patti LaFleur, Certified Dementia Practitioner, Caring Across Generations Care Fellow, former full-time care partner, and current advocate and educator for dementia.

Today we’re talking about creating systems, routines, and success as a caregiver.

In this episode: As caregivers how can we adapt our routines to better accommodate the changing needs of loved ones, especially when living with progressive conditions like dementia? What advice would you give to someone who is just starting their caregiving journey? Are there any essential steps they should take to establish successful practices from the beginning? What strategies can caregivers use to involve other family members or friends in the care process and create a support network to share the responsibilities?

Find out more about Patti LaFleur:
https://www.carepartnerpatti.com/

Purchase Patti's Course - Dementia Care: Connecting Using Art:
https://www.kalearningcenter.com/plans/296431?bundle_token=1f37a058b86e36565e9f7c4a7d7aca87&utm_source=manual

Find out more about Kosta Yepifantsev:
http://kostayepifantsev.com/

Transcript

Patti LaFleur: 0:03

By having a system that was predictable for both of us, it allowed her to be successful. It allowed her to engage in activities with me because I could schedule the activities during the times. I knew she would be successful.

Caroline Moore: 0:21

Welcome to Now or Never Long-Term Care Strategy making. themselves. with Kosta Yepifantsev a podcast for all those seeking answers and solutions in the long term care space. This podcast is designed to create resources, start conversations and bring awareness to the industry that will inevitably impact all Americans. Here's your host Kosta Yepifantsev.

Kosta Yepifantsev: 0:43

Hey, y'all, this is Costa and today I'm here with my guest, Patti, certified dementia practitioner Caring Across Generations care fellow, former full time care partner and current advocate and educator for dementia. Today we're talking about creating systems, routines and success as a caregiver. Welcome, Patti, would you mind sharing a bit about your personal story of caregiving with your mom, Linda, and how your work as an advocate began?

Patti LaFleur: 1:13

Yeah, so I started caring for my mom, Linda about three years ago, she got diagnosed with younger onset mixed dementia in when she was about 62. She moved in with me three years ago, because my dad was caring for her at the time, but it became too much for him to care for her. So she moved in with my husband and I, and we never looked back, we lived a life that was full. Still, despite her dementia. Despite her type one diabetes, we lived a life that was full of love and light and beauty and dancing and laughter. And we just really tried to live in the moment as best as we could. Sadly, she passed last year due to complications with her dementia and her diabetes. But since she passed, I've really used my voice and our story as something to really challenge the stigma around dementia and Alzheimer's advocate for caregivers and advocate for the people living with dementia. They can live a beautiful, wonderful life, despite the challenges of the diagnosis with the right care systems in place that support them. So it was truly just a beautiful opportunity that I got to provide her that space.

Kosta Yepifantsev: 2:44

And we are very excited to know more about those systems. Before we get started, just in case people don't know what is the term mixed dementia?

Patti LaFleur: 2:54

Yeah, so dementia is an umbrella term that many different types of dementia fit under Alzheimer's being the most common and the one that most people are the most familiar with. What mix dementia means is that she had multiple types of dementia. So she didn't just have Alzheimer's or vascular she had a combination of two or more dementia is the thought was vascular and Alzheimer's. That is why it was a mixed dementia diagnosis as opposed to Alzheimer's or FTD, or vascular Lewy Body any of the other dementia.

Kosta Yepifantsev: 3:35

I see. So as a caregiver for your mom who had mixed dementia, what were some of the unique challenges that you yourself faced, and how did you use systems and routines to overcome them?

Patti LaFleur: 3:50

I think that the biggest challenges for me were the activities of daily living. So as my mom's dementia progressed, she needed support, she needed support in the bathroom, she needed support with showers, she actually also had fallen and broken her hip about a year before she passed. So she needed help with lifting and walking. So she needed a lot of physical health to be successful in living her daily life. So those were really challenging. Another really challenging piece for us that was different than other people was that she also had type one diabetes. And so that required a lot of managing her blood sugar in addition to and medication in addition to her dementia. And then another thing that was just a huge challenge was watching my mom lose pieces of herself right watching. It was hard to lose my mom but watching her lose herself was even harder for me.

Kosta Yepifantsev: 4:55

Was it paramount for you to develop a schedule like If you didn't have a schedule in place would every day be considered just chaos

Patti LaFleur: 5:05

100% I mean schedule and routines and following the same activities every day. Yeah, supported her dementia, but also and supported her diabetes, like we needed to follow a schedule, we moved in with me. And overnight, I was like, we're going to establish something that is a schedule for her, we're going to eat at the same time, we're going to nap at the same time, we're going to make sure that everything kind of happens at the same time. And by having a system that was predictable. For both of us. It allowed her to be successful, it allowed her to engage in activities with me because I could schedule the activities during the times, I knew she would be successful, right. So we would do art class at this at 1045. Because I knew she would have had breakfast at a nap, gotten up, gotten ready have gone to the bathroom, taking a shower, whatever it looked like. And it allowed her to be successful in art because it was predictable. It was the same thing every day. And yet not every day was art class. But it was okay then it was music. Or it was we're gonna do a go for a walk, or we're gonna go visit a friend. We followed a routine and it helped her to go to sleep at night. It helped me to have tools for her sundowning, right, like there are difficult parts of the journey, like sundowning and emotions and these things, but by having a routine, I knew that that time was coming. So did I schedule art class during that time? No, I scheduled like, Let's hang on the couch and cuddle our dog and watch TV. Right like something that was predictable?

Kosta Yepifantsev: 6:50

Was it a full time job? I mean, it sounds like you weren't just working an eight hour job. It seems like you were working literally 24 hours a day.

Patti LaFleur: 6:58

100% Yeah, yeah, for sure. When I and when she first moved in with me, I was teaching and so I had a caregiver that came in to do things well, and I was teaching from home because it was the pandemic. So I had some flexibility, right. During lunch, I would go down and eat lunch with my mom. And then I would go back up and teach right because it was a weird time. But then I ended up quitting my job because it was it was a full time job to really follow a schedule that was going to allow her to be successful, and me to be successful. Because if I wasn't feeling successful, she wasn't right.

Kosta Yepifantsev: 7:36

What are some of the advice that you could give to people who are starting their caregiving journey? And are there any essential steps they should take to establish successful practices from the very beginning?

Patti LaFleur: 7:51

I think one of the biggest things is to know your person, right. So the person for me, the thing I knew about my mom is that she liked to take a nap. She liked to get up in the morning. So I established a schedule that was reflective of what I knew about my mom. I knew my mom liked to go to bed a little bit earlier than others. So I made sure that our day started a little bit earlier, our nap was earlier. And that allowed her to go to bed at a time that was reasonable for her and allowed me to have time, right she would go to bed at nine and I would get an hour and a half of just me time I could watch my you know trashy TV and call my girlfriends and drink a glass of wine, you know, and allowed B to be successful. And I think that that's something that as you're establishing a schedule, it's important to know your person. But it's also important to create a schedule or routine that allows you to be successful because I'm just as important in the care partnership with my mom. And so I needed some Patty time I needed time. I couldn't just go tell she went to sleep and then I went to sleep and then I woke up with her like that. I would have never survived I'd been like I need the honey that wants some trashy TV, I need to watch the Kardashians or whatever. Right? Absolutely. That's not something I'm watching with my mom.

Kosta Yepifantsev: 9:19

I feel like a lot of times when people are confronted with this paradox of having to take care of you know a mom or dad or spouse for that matter. I think a lot of times they feel like they know best. And so they create a routine that suits them, and then they try to get the individual to fit within their routine. Yeah, I think that was really interesting that you understood your mom well enough to be able to create schedules routines to be able to create a lifestyle essentially, that would keep you from burning out which happens to so many managers on a daily you know on a daily basis. He says Honestly, how did you keep from from burning out?

Patti LaFleur: 10:03

I mean, it's, it goes with the territory that there are times that I did probably feel burned out. But I also something that was really important to me was establishing some respite. So I unfortunately did not have a family that could help provide respite for me, my husband was incredible and what hang with my mom, so I could go to the store do things, but he couldn't care for her overnight because he couldn't do the like activities of daily living and those pieces, which is so fair. So I needed to figure out what respite would look like for me. And for me that look like her going to a memory care facility every six weeks, and just doing a couple nights where she was there, and I was here. And it allowed me to not get lost in my caregiver journey. It was I identified so much as a caregiver. But I also needed to remember that I'm ready. And I'm a person that also that's just not all I am. And so that allowed me that space, I didn't need a break every day, I didn't need a break every hour, you know, I just needed a routine that allowed me to have some time for myself in my daily living. And then I needed something that I could look forward to Right. Like she goes there. And I sleep and I see my girlfriend's and I, you know, I know and do whatever I want. That is so and I, it was pretty late in the journey that I figured that out. And so I think that if I was thinking, what would I do differently, I would have thought about how I could build and respite earlier on. And I just I was so you know, we're all overwhelmed when we get into a caregiver journey. But I think that, that respite piece, and like really having some time to be yourself is so important.

Kosta Yepifantsev: 12:02

I think sometimes caregivers they feel this guilt of you know, first off, they are superhero individuals. So yeah, somebody to take on the responsibility of caring for another adult person, even if it is a family member is an enormous task. But it's the it's the emotional toll that it takes doing it day in and day out, like, you know, when you run like a marathon, and you don't want to stop, because you don't want to give up, right? You don't want to walk to the end of the race and say I couldn't finish. And yeah, I think that there's this stigma around caregiving where it's like, I have to do all of it. Exactly. And, and so I speak with caregivers regularly about you don't have to be a superhero. First off, you're human.

Patti LaFleur: 12:50

Right, for sure. Grace. Exactly. Yeah, exactly. That's something that I think about a lot too, is that like, I would struggle because I was like, Oh, I'm the only person that can care for my mom, and I can care for my mom the best. But that doesn't mean someone else can't care for my mom, good or great or even Right? Like, I know that I could care for her better than someone else. But that doesn't mean that somebody else can't care for her. And I think that's such an important piece. Like once you kind of get out of your head about that. It's easier to let someone else like I just had to let go of the fact that I'd pick her up. And you know what, her hair wasn't gonna be curled. Oh, dang it, you know what? I mean?

Kosta Yepifantsev: 13:37

People like that, that sets people just down the rabbit hole when they went back, and their hair isn't curled. Or, you know, Yeah, something's out of place. You know? Yeah, that's why I'm like, is

Patti LaFleur: 13:47

she breathing in? And she's smiling. Okay, cool. Is she even if she wasn't smiling, like, Okay, well, she's smile again? Probably.

Kosta Yepifantsev: 13:56

How did you how did you reconcile? You know, you're, you're so young. And you know, like, your life was just kind of getting started. You were starting your career as a teacher or you may have been, you know, maybe less than 10 years into your career. Like, how do you reconcile putting your life on pause for, you know, two or three years to become a full time caregiver?

Patti LaFleur: 14:20

You know, I didn't, I was pretty resistant to that at first. I mean, I really am someone that very much identifies in the roles I'm in. So I very much identified as an educator, that was something that was really important to me. But then as I started to care for my mom full time, and I was working full time, I just realized that I couldn't give 100% to either of them. And so I just didn't feel great. And I remember I would just continually kind of just talk about how I didn't feel great and I didn't feel I just felt really overwhelmed and my husband, sadly had lost his dad. A few years before I, before I started caring for my mom, and he was like, I would do anything to have had more time with my dad, though no matter what we can make this work, so that you get this time with your mom and really get to enjoy it, because I wasn't enjoying it when I was working two full time jobs, you know, it was like, Okay, this is not bad. We're just surviving. And then once I was able to let go of one piece of my life, I was able to really focus in on the time that I really got to enjoy with my mom.

Kosta Yepifantsev: 15:38

So as the disease as dumb as the dementia progresses. Okay. And, you know, unfortunately, dementia is something is a condition that doesn't reverse. Right. Once you're once you have dementia, it's a it's a consistent decline. How did you happen to adapt your routines to better kind of accommodate those changing needs?

Patti LaFleur: 16:03

Yeah, I think that one of the biggest things for me is I, whenever there was a pretty significant decline, I reached out to her doctor, and we received some home health services. So then I would have occupational therapists come in, have physical therapists come in. And so they really helped me to think about from a safety aspect, what it looked like, what a tasks do I need to have my mom's still really be helping with and participating in and what other tools can I put in so that I can take some of those things off. And so as I would learn tools or strategies to support my mom, it changed the timing that it would take for us to do things. So then I just adjusted the schedule to meet that to focus on it at from a safety aspect for me, especially after she fell and she was in a wheelchair. I mean, that changed the dynamic pretty significantly. Overnight, right? And so that impacted those pieces, but then I really just tried to keep the schedule, as similar as possible. As far as kind of the big ticket items, right? We always had our meals at the same time. I all I mean, naps, maybe we're a little bit longer. And maybe she slept in a little bit more in the morning. But it just was very fluid around the pieces I could change. But then staying really consistent with the things that were working. I mean, I think that's the thing is, so often a decline happens. And then we start to think about what the person living with dementia can't do. But what I tried to think when there was a decline, like, okay, she's in a wheelchair, so she can't stand to shower, but she can still sit and help me wash or she can still fit and attend to her art class. Like she's not going to go in person to an art class, but we could do art at home. So how can we still do the same things, but I make the adjustments so that she can still attend to whatever the task is at hand, it just might look a little different,

Kosta Yepifantsev: 18:15

you know, that we talked a little bit about how Dementia is a something that progresses and it's a consistent decline in terms of health. And I'm going to ask you, it's it's kind of like a technical question, you know, but systems and routines has to have some technicality to it for it to be successful. Yeah. And when you're when you're providing care for somebody, especially, you know, a family member, you're wanting to see the little positive ray of sunshine and light, you know, in, in your relationship to know like, okay, you know, all of this is worth it. Because, you know, for that brief moment, I'm going to be able to have, you know, my mom, as I knew her prior to this condition. How did you? How did you reconcile, like, how did you go it day in and day out waiting for those moments, but consistently staying true to the fact that you wanted to provide the best possible care for her just so that you could wait for that one period? Where you're like, Okay, this is all really working.

Patti LaFleur: 19:23

Yeah, I think for me that those moments came through some of the activities that we did together. So I really tried to provide her opportunities in music and art, especially. Those were things I mean, even a couple of days before she passed, we were still engaged in art together. It may be looked different, right? Like I was saying like, but she was still able to do art and just wasn't the way that maybe we traditionally would think about art but she still was able to attend to those things. And through those activities, we were able to connect, we were able to laugh, and she still was able to make choices. You know, she wasn't able to make choices in a lot of areas of her life. But in art, she could pick the color. And she could pick her paintbrush even when she didn't have the word she could point or she could grab. So really creating these opportunities where we could sit side by side create together, she could create and then I could ask questions, I even if she didn't respond to the questions with word she could respond, I could tell it with her eyes. Or I could point out like, Oh, I see that you're looking at the blue, do you want to try the blue and she could nod her head. So I just these moments where we could share an experience together really kept me going. We laughed so much during those things. I mean, she would always make this little sound like diddly doo diddly with the painting. It was like her happy sound. And I could tell that she was enjoying the art without her saying I had fun doing art with you. Right, I could just see it. And those were the moments that kept me going and the quiet moments, you know, we'd look at books together, we'd be together on the couch, and we could hold hands. And I could see the love in her eyes, even though she didn't have the words. But really, these opportunities to create art together in a variety of ways was so beautiful for us.

Kosta Yepifantsev: 21:35

And I do want to congratulate you on launching your first course Dementia Care connecting you. That's pretty awesome.

Patti LaFleur: 21:44

Pretty silly.

Kosta Yepifantsev: 21:46

I mean, I mean, you've you found success in it, obviously the connection, the fulfillment. You know, like, like I was saying earlier living day in and day out and finding unique applications to be able to still connect to the to the person that you care for. What do you hope that it brings to other families that are struggling with finding semblance of normalcy in the care process when it comes to dementia?

Patti LaFleur: 22:11

I think that for me, my hope is that art just becomes a tool for connection for people living with dementia. So for me, it's about like the person living with dementia still deserves to have these opportunities to create and to explore and to feel successful. And then I My hope is that the care partner, the person that is providing the care, is also having this opportunity to slow down and live in the moment and just really focus on something it can feel extremely challenging to find something to do with your loved one, right? They my mom couldn't attend to games in the way that I knew she had liked before puzzles were challenging. I mean, we we tried a lot of different things. And art was something that she could feel successful doing throughout the whole process. And my mom wasn't an artist. I wasn't not an art like that. It's so funny. Like that was not that's not us. But it became this face that allowed us to have these opportunities that we wouldn't have had in trying to play Go Fish or something that I would have thought that she could do. Like,

Kosta Yepifantsev: 23:32

yeah, it was kind of like a relationship, mother daughter relationship as opposed to a caregiver. And somebody that's receiving care relationship. And it's it's hard, especially as dementia progresses to late stages. It's hard to break out of that caregiver relationship and find some normalcy. So I think that's fantastic, that you actually picked an activity that you guys had never done. And it's still Yeah, and you guys were able to build a friendship around that. And for a moment, you know, just be mother and, and daughters.

Patti LaFleur: 24:08

Yeah. And she just felt so successful. I think for me that that it felt really hard for me to find places for her to feel successful. Like we all want to feel successful. And there was so many places where she had had so much taken away from her. But that was a place where she could just express and be and just live in that moment with me and we could happen. She could sing our little song. It just became a beautiful space for her to feel successful.

Kosta Yepifantsev: 24:38

Yeah. You know, Patti, I think something we overlooked so often in the care process is utilizing community. So What strategies can caregivers use to involve other family members or friends in the care process and create a support network to share the responsibilities?

Patti LaFleur: 24:58

I think that some of the Biggest strategies is, like I said earlier is just being okay letting go something for me, my sister would come up and she wouldn't have been around a lot. And I would be like, she's not doing it right. Or did you see what say that you're like, so worried about it. But my mom was happy, my mom was clothed. My mom was bad. Like, yeah, you have to let go of some of those pieces. If someone shows up to help you and support you, like welcomed them with open arms, you know, as long as it's safe. But if the if your loved one safe, welcome them and just use that as your time, right? Like, it's, they'll be okay, and just let those little things go, that may be bothered you, I definitely had a really hard time with it. So I understand that. The other piece about getting people involved for me, is really thinking about kind of two things. One thing is thinking about how you can delegate tasks. So there might not be someone that could come to your house and could provide care, they might not feel comfortable, or they might feel like they are they live far away. But they could do grocery delivery services for you. You they could pay for your house to get cleaned. There are some tasks that that someone could help with, even if they're not willing to come in the home. Another thing that I did is we created an Amazon wishlist when my mom moved in with me, and I put all the things that we needed, you know, incontinence supplies, and low shades and art project. I mean, so many things, and I just posted it, and my friends and family were able to just buy specific items that helped us along our journey, because like, they didn't know what we needed. You know, they're like, What do you need? And I didn't know what we needed. I'm like, oh, I need help.

Kosta Yepifantsev: 26:49

Do you feel like you were kind of cutting edge like in terms of how you, you provided care? And the only reason I bring that up is because the things that you're describing? I mean, even like, you know, for me, it took us years to figure out, you know, how to optimize certain processes. And when you were describing the Amazon wish list. Like I just remember when that happened for us. We were like, Oh my gosh, why did we not think of the sooner you know what I'm saying? Yeah, that's the first thing I did. You know,

Patti LaFleur: 27:18

I just very, very clearly like people to help me. Okay. Well, and it just Yeah, I don't know why it came to me. It just like people kept asking me what I needed. And I was like, I don't have time to keep telling him what I need. I think it just became a time management thing. I was like, in survival mode. And then I did it. And then people were sending us things. And I was like, Oh, wait, people are here to help. Okay, let me put more on there.

Kosta Yepifantsev: 27:45

Yeah, yeah. Do you ever encounter and we're about to wrap up. But I just wanted to ask you one more thing, did you ever encounter people who don't have the means to, you know, not quit their job they have to work or that don't have the financial means or even the tech means to be able to find the type of solutions that you did? And for those types of people, like what do you say to them to give them some level of solace, so that they continue to stick with it? You know?

Patti LaFleur: 28:18

Yeah, I think that there's kind of two things that I think about when I think about that is the first thing is like, what kind of support do you have for your own mental health? Because if you don't have the financial resources to hire help, or quit your job, or these kind of things, what kind of support systems do you have in for your mental health? Because an emotional health because those things are really going to carry you along? So are you in a support group? Do you have one other person that is a caregiver that understands what you're going through that you can just even bet to or they can provide support or resources. And the other thing is like, there is like, areas Department of Aging, like I called my County Department of Aging, like that was one of the first things I did. And they were like, Oh, we have this respite grant. And we have you can apply by doing this. And, and so immediately, I was like, oh, there are some resources. They do involve tech. And they do involve some other things. But I do think if you reach out to your local Department of Aging, you can learn that there are some resources in your area that can provide some help. And if you have, let's say, even four hours a week, that's four hours where you can maybe find another four hours. Yes. Those supports that allow you to keep going.

Kosta Yepifantsev: 29:42

Absolutely. So we always like to end the show with a call to action. Will you share a few of your favorite resources or organizations that can provide additional guidance and support for caregivers looking to establish successful systems and routine teens in their caregiving journey

Patti LaFleur: 30:02

yeah so I mean I just already said like calling your local Department of Aging is like number one I tell every person like that's where you start because it no matter what your question is, do you need quick like support with little your stuff or you need stuff with like getting your power of attorney, they can help navigate for the things that are within your local area, right? It's so hard because so many people are in so many different places, and there's different resources per county. So that's one beautiful one. And another one that isn't necessarily for the care recipient, but for the caregiver, especially for me, with my mom being younger onset is called Lorenzo's house and Lorenzo's house is unapologetically focused on younger onset Alzheimer's and dementia. And they provide support for the care partners, care partners, spouses, and specifically youth as someone who went to support groups and was the youngest person there by a lot it. Just even having someone that was like my age would have been so lovely and Lorenzo's house provides that space for youth and I mean they have programming from for eight year olds all the way to like 35 year old youth that are caring for a parent. So it's just a really beautiful space for younger onset families because that is not something that is really talked about or focused anywhere else.

Caroline Moore: 31:40

Thank you for joining us on this episode of Now or Never Long-Term Care Strategy with Kosta Yepifantsev. If you enjoyed listening and you wanna hear more make sure you subscribe on Apple podcast Spotify or wherever you find your Podcasts, leave us a review or better yet share this episode with a friend. Now or Never Long-Term Care Strategy is a Kosta Yepifantsev production. Today’s episode was written and produced by Morgan Franklin. Want to find out more about Kosta? Visit us at kostayepifantsev.com