Patti LaFleur talks about about her caregiving experience & thoughts of the future.
Patti LaFleur: Yeah. So my name is Patti Lafleur and I cared for both of my parents but more specifically, I cared for my mom, Linda who had type 1 diabetes and mixed dementia in my home. She sadly passed 11 months ago today. She passed away and then now, I've stepped into a more kind of long distance caregiver role in caring for my aunt who has early stage, dementia and Alzheimer's. Or dementia or Alzheimer's. We have it figured out exactly. I'm sorry.
Katie Wilkinson: Yeah, what obviously I would love to talk about your relationship with your mom and what that experience was like. But you know, first before we get into that, what's the what's it been like now? Long-distance caregiving and and some of the differences
Patti LaFleur: Yeah, I mean it's she isn't too far from me, so that's helpful. But there is a definite different piece of caring for a loved one in your home versus caring for a loved one, that is living in a facility. So I, with my mom, I did everything right. I was the cook. I was the cleaner. I was the caregiver. I was the medicine. I did everything, and with my, and I am the support system. For those people right there. All of her needs are being met by others, but I am still the one that is figuring that groceries and doctors appointments, and transportation and things like that. So, in some ways, it was easier with my mom because I was in charge of everything. So it's like, Oh, who's gonna do that Patti is, you know, like that. We know, we know exactly who's doing that because it's just me. But with my aunt, it's like navigating this amongst other people who are trying to
Patti LaFleur: Help me and me stepping in, when I need to step in. So, it's a very different role and easier in some ways and harder than others. You have to be really organized in a different way, completely.
Katie Wilkinson: Yeah, I was gonna ask I guess, two questions like, How did you end up in this position hearing for your aunt now and then my other question is like, How are you, organizing and coordinating all of this between you and all of the other people that are involved?
Patti LaFleur: Yeah, so I'm I
Patti LaFleur: my aunt didn't have any children and I am the most organized of all the cousins. And so it just kind of happened in my lap. She needed care when everything was happening with my parents. And so, at that point, I was unable to provide care for her because I was caring for my mom, and my mom was declining. And then my mom passed and then I was caring for myself. Um, and I knew that this was a role that I should step into. So, just about six months ago, I stepped into the role because I knew I could do the job very well, because I do have a lot of experience and advocating for loved ones, living with dementia, and Alzheimer's and tools, and connections, and resources. And then, navigating this organize, it's just really making sure that I have a way to organize the information in a way to
Patti LaFleur: Gently and effectively communicate with the people that are supporting me through this, okay? You're taking her to this appointment. Okay, you're doing that. Oh, but I need to step in for this one. So really just navigating what I can do and what others can do to support me and really in this caregiving journey, I am on, it's really about setting boundaries. So for me the boundaries have been kind of the most important part with my mom. I didn't have a lot of boundaries because she was with me and I couldn't have boundaries because it fell on me a lot. But with my aunt, I'm like, I'm gonna be gone this weekend so like you're calling someone else. Here's the numbers to call. Here's a calendar. It means all very clearly laid out on. This is my turn to help and then now it's somebody else's.
Katie Wilkinson: for sorry, somebody logistical questions but for people that are like in sort of a similar situation to you now, How likewhat the actual systems you're using to manage that are using like Google calendars or just a group message or slack like what systems you use to coordinate this kind of care.
Patti LaFleur: Being. Yeah, there's kind of two big things that I do is that we have just a group message that has all of us in it and then a specific message with the one person that helps me the most. So we're just in constant communication. She and eye doctor appointment. Yesterday, I took her to the eye doctor. Then I'm filling that person in and that person's texting me saying, Okay, and I called for the dentist. So now we have a dentist appointment so we're coordinating that and then I use an app called Way Wiser and the Way Wiser, App is a calendar app and multiple people have access to that calendar. So, they know when things are coming up and they can get alerted. There's also a financial piece that they're adding into this app, which is why I decided to go with weight wiser as opposed to other applications because I thought it would be nice. I am managing her finances, but I want other people to have access to them so that we can make sure we're all really aware what's going on because that was kind of a concern.
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Katie Wilkinson: Sure. Yeah, that's the complicated piece when there's many family members or many people that are involved in the transparency of like what's going where when and why, and…
Patti LaFleur: Are exactly.
Katie Wilkinson: that's awesome.
Katie Wilkinson: But that's working for you.
Patti LaFleur: Yeah. Yeah,…
Patti LaFleur: so the financial pieces really, can be really complicated and I want to make sure just for my own self that, like, people know when I'm using her debit card, that I'm using her debit card for her, right? Like they're just clearly able to see that. So that there's never a conversation, especially at this point where she is in her dementia. She's really confused about money is a like, that's a really challenge for her and she's really every transaction when she gets her bank account, she has to call me and she has to talk through every transaction and what was purchased and who purchased it and when was it purchased? So this is just a tool. So when she calls other people that they have the hope, I mean they don't have the financial peace yet, but when they do like, it'll be really helpful that they can be like, Oh yeah, Patti said she bought you
Patti LaFleur: Your depends and toothpaste and all of these things. So she knows because right now she's at a point where she's trying to call Amazon and be like, what was the order and they are like, We don't know. You know, we you did it.
Katie Wilkinson: And yeah, that's awesome. Thanks for sharing. I'm sure that's helpful to people also that are trying to figure out,…
Patti LaFleur: Ah,
Katie Wilkinson: you know, how to manage all these moving pieces. and,
Patti LaFleur: Yeah, there's so many moving pieces.
Katie Wilkinson: Yeah, and it's awesome that you have. Well, Maybe awesome. It's not the right word but it's beneficial that you have so much experience in caregiving to to be on this care team. Now, I guess moving back to talk about your mom a little bit because you know, this was Obviously, an important relationship to you and a big chunk of your personal story. And can you tell us a bit more? Just about your caregiving experience with your mom? You know what was most challenging? What was most rewarding and anything else you'd like to share?
Patti LaFleur: Yeah for sure. So caring for my mom, just felt like such a beautiful opportunity for me. I use the word opportunity to describe our care partnership because my mom adopted me when I was a baby and it felt really reciprocal to be able to care for her in her later stages. And so that to me was just such an opportunity and such a blessing and we really lived, like, my mom and I really lived and loved and laughed and found joy despite dementia. We did everything that we could to just really find joy and make sure that every day was a
Patti LaFleur: An opportunity for us to continue to connect and build on our relationship. We obviously had a beautiful relationship, pre-dementia, and so, that was able to carry over into her, dementia care. But I really intentionally continued to connect with her through activities, and dancing, and laughter, and reading, and Creating this beautiful environment where she can really thrive in for me, it's really important that we think about how people can still live despite a dementia diagnosis. There's this image in your head when you hear the words of dementia and Alzheimer's and I really hope that my mom and I story challenges that stigma around dimension, Alzheimer's and shows people that you can still live a beautiful life.
Katie Wilkinson: Yeah. I mean your videos certainly demonstrate that like your mom is such a light in in the videos you share and definitely changes. I think what people picture in their mind when they you know picture dementia patient. and,
Patti LaFleur: Exactly. Yeah, we're in Disneyland a year ago today like that we were living you…
Katie Wilkinson: Oh, wow. Yeah.
Patti LaFleur: like I mean it was hard and challenging and I I don't want to discredit that piece, you know, I was exhausted a lot of the time but by having a routine and a schedule and finding love and joy and laughter it made it a little bit easier.
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Katie Wilkinson: yeah, I mean Having a routine and a schedule obviously made it easier like you just said. And what was that transition like like you know, right when you sort of start taking care of your mom, I'm sure there was a transition period. It was quite hard. You know, how long? I mean that's not the right question but you know, how long did it take to find this routine and find it to be a joyful experience?
Patti LaFleur: Totally, when she moved into with me at, like happened overnight, my dad had been carrying for her but that his health declined and he actually ended up in the hospital and she was just gonna come live with me until he was better, and he just never really got better. So, she continued to live with me and at first it was really challenging. I mean I was working full-time was caring for my mom. I we immediately hired a caregiver because I was like, There's just no way I can do all of these things. Well, I'm trying to figure out paperwork and systems and there's a lot of those pieces. We have to make sure that I am her power of attorney. We have to make sure, I know her medications. We have so many logistical things that I need to figure out in order to actually be her care partner.
Patti LaFleur: And so, we hired a caregiver to help us and then also, you know, my dad was used to caring for her. So when he got out of the hospital, there was also he had some care needs, but also he had some husband needs right? He wanted to spend time with his wife. Which is fair. So there was a transition piece where we were going over to my parents' house every day. And then the caregiver was meeting us there and then they were spending some time there, and then they caregiver was bringing her here when I was done with work. So it took us a really long time to get into a group. Thankfully, I
Patti LaFleur: Or not. Thankfully, I don't know, thankfully, I was a teacher at the time and so I had summers off. So there was like a four month period where we were just in survival mode. But then I had the summer off to really get us in a routine and prepared for the following school year. I tried to do both, I tried to teach full time and care for my mom, full time with the caregiver that we had hired. And it was just too much. I couldn't give I felt like I was giving 70% to my teaching and 70% to my mom and zero percent to Patti and I couldn't do all couldn't do both roles. And thankfully I have a husband who was working and so we were able for me to quit my job that following year
Patti LaFleur: And make some changes in our lifestyle that allowed for me to care for my mom in our home without paying for a caregiver, right? Like we were using money to pay for a caregiver but then, that money just became Something that we didn't have that expense.
Katie Wilkinson: Yeah, that's A hard decision to make, I mean many care givers go through the same decision-making and parents like we're paying for care. But would one of us rather be at home with our child or our care recipient and
Patti LaFleur: Totally and I wanted her, I wanted to be able to have some time for myself and we were I felt like I wasn't give I wasn't with her a lot, right? Like I was like Oh I'm working full-time. I mean thankfully, I was working from home but I was working full-time. And then I didn't get to have any time for myself because I felt bad asking for care for the weekends or things like that. So I was able to chip to having care for the weekends every once in a while so that I could have some Patti time because during that time, I didn't have any time for myself
Katie Wilkinson: Yeah, I mean that's also a I'm sure. With the pandemic was a weird time and people started working from home and now this separation, even if you're not a caregiver just separating like work from life, becomes strange. So to Throw throw caregiving in the mix.
Patti LaFleur: Totally.
Katie Wilkinson: You know, it's just another layer of that.
Patti LaFleur: Totally.
Katie Wilkinson: and can you talk a little bit about you know it's been almost years since your mom passed, what's life been like for you since
Patti LaFleur: Um, it has been a huge adjustment. It was really hard for me to, I mean, it's hard to lose my mom. You know, that was my best friend and I miss her every day but it was also hard for me to give up the caregiver role in some ways. Um, you know, I we had gotten into a routine, we had finally like got into this place where like we were in a routine, we had a schedule, we knew what we were doing. I mean, I was getting up a couple times a night and I was checking on her. So I mean, for the first, I mean, even still. Now I wake up in the middle of the night, you know, often like, Oh, I need to go check on her. Oh no, I don't need to go check on her. So it was A huge transition for me, personally, and, you know, professionally, for lack of a better word. And now, I've just really been trying to navigate how
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Patti LaFleur: I continue to advocate and share our story and change, you know, the dementia world wealth still, you know, figuring out what's next for me, I haven't really decided what's next for me. I wasn't ready to go back into the classroom in September. It just felt too quick for me after she passed. You know, teaching is a job where you have to give a hundred and ten percent and I didn't have a hundred and ten percent to give. So I'm just kind of still in this place where I'm trying to navigate, you know what's next for Patti, and
Patti LaFleur: What is gonna bring my life The most value? I mean, I learned if there's anything that I learned on this journey is that life's short and in connecting with other care givers, I've learned that. But I've also learned from caregivers that are my age and are caring for their loved ones that are their spouses, they had a stroke or they had these other things happen and like the so short. So like What can I do? That's gonna really allow me to live a life where I can thrive and I can support others around me.
Katie Wilkinson: Yeah, I mean I know you've spent like that's part of why you're sharing. Your story is to, you know, destigmatize dementia and and get advocate for other. Caregivers and care recipients and I know you're sort of uncertain but any thoughts about what you know, what comes next in that realm? Or you think you'll go back to the classroom?
Patti LaFleur: I, I don't know. I, you know what, some days I'm like, I'm going back in the classroom and then the next day I'm like, No, I'm gonna figure out how I continue to do the work I'm doing. I mean I doing what I'm doing now which is been like some contract work and some you know, small things like that, it has allowed me to still do the volunteering and the working with the Alzheimer's Association and doing these things that I wouldn't have had. I wouldn't have the opportunity to if I'm working full time in the classroom so I'm still trying to figure out what's next for me. And I don't know what that looks like.
Katie Wilkinson: Yeah, I mean, it's sort of exciting worlds.
Patti LaFleur: Yeah. Yeah,…
Katie Wilkinson: World's your oyster
Patti LaFleur: it's pretty.
Katie Wilkinson: I believe it and you started to talk about this a little bit about your husband. you know, also working and allowing you the opportunity to, to Care for your mom full-time and Just to shift a little bit that, you know, the point of this podcast is to like shed light, a little bit on the impact that money and finances has on caregiving and life and relationships. And can you talk a little bit about while you were caregiving? You know, how that impacted thoughts of spending or saving, or even just thoughts about your future?
Patti LaFleur: Um yeah, it was really hard to go from a dual income household to a single income household and it also really impacted our future planning, right? So before my mom moved in with me, we had just gotten married and we were like, we're gonna start a family and we're gonna do these things. And when my mom moved in with me, not only emotionally. I don't think I could have done, you know, having a baby and caring for my mom but financially we couldn't have Paid for two people's care. You know, it was a lot. I was very fortunate that my parents did have some savings. So we were able to use
Patti LaFleur: Some of their savings to paper care but it did but it didn't pay for my care, right? Like because I'm her daughter and I they didn't qualify for programs that would allow for my care to be paid for. So yeah, it didn't pay for my care but it did pay for other care to support her. And especially because my mom not only had mixed dementia, but she had type 1 diabetes.
Patti LaFleur: The cost of her care because it was so specialized and needed to be skilled. Nursing was extremely expensive and actually I couldn't use any home care agencies within our area because she needed insulin to be monitored. And because of insulin being classified, the way it is, it needed a skilled nurse to do to to deliver. So I couldn't even just use any general home care agency in my area. So I actually had to hire privately which was just as expensive if not more expensive and when we looked at you know because they're what came a point where it was like, well maybe I do need to think about what I could do for work. And if I was going to do things for work, we either had to pay for caregiver or we looked into memory care and because of her type.
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Patti LaFleur: Diabetes and needing skilled nursing. We were quoted that her memory care costs would be around 14,000 a month. And that her money would have gone very quickly. We wouldn't have been able to live. She wouldn't have been able to live there very long. So, she would have just been right back in, without any money that could provide care in the home. So, it became really, it really, for her level of care, wasn't really even an option.
Katie Wilkinson: I smiled when you said that because that's wild, that's it. That's a crazy amount of monthly pay to for that kind of care. Yeah.
Patti LaFleur: Exactly. Yeah. And just really general care. I mean, it wasn't like, I mean I'm…
Katie Wilkinson: Right.
Patti LaFleur: what not looking at the fanciest facility in the area in fact. Couldn't live in most facilities. They had to have skilled nursing within the facility because of her Type 1 diabetes. So I couldn't just look at any facility in the area, even if it was memory care, they didn't have 24/7, skilled, nursing She could not live there. So if we had, I looked, you know, if she had gotten to a point where she had qualified for Medicaid, there was one facility in all of King County that Medicaid would pay for that would would, she would be able to live in
Katie Wilkinson: Yeah, that's crazy.
Patti LaFleur: Yeah. It is so crazy. And also at the same time, we were paying for my dad, my dad was also in a facility at this time so and…
Katie Wilkinson: Right.
Patti LaFleur: they couldn't have been at the same facility because he couldn't, he wasn't in a place where he needed memory care. We wanted to like, keep so it was like, I mean combined. His care needs were a lot less than hers and he was in a very small. He only wanted the smallest room, he could find and the whole place. But I mean it would have been probably twenty thousand dollars a month between both of my parents. It did not.
Katie Wilkinson: yeah, I mean, you mentioned
Patti LaFleur: Yeah they would not. I mean that they wouldn't have made it a year. You know what I mean? Like they couldn't have paid for a year.
Katie Wilkinson: Yeah, that's so much and you mentioned that your parents had savings and that's how we were funding. A lot of the care and I guess I'm curious. You know what, what else went into that? What was the insurance situation? Like How are you? How were you, or whoever funding your dad's facility? Like What was the rest of the the picture for paying for care?
Patti LaFleur: Yeah. So, for my dad. So my parents had a savings and they were married and so it was combined. And then they received Social Security, very small. And my mom worked very little amount of time because she raised the raised me and my sister. So she worked a really small amount of time. So her Social Security was even smaller. Um, so they got a very small social security that did not cover, even a quarter of my dad's facility but my dad, sadly he moved into the facility in 2020 and passed in 21. So he there was a very short amount of time that we were paying for his care, which is why he was able to stay there. And also when we picked a place for him to move into, I made sure that it was a place that I loved for a Medicaid spend down. So, we were in a spend down program, that would have allowed him to stay in that facility.
Patti LaFleur: He had reached two years but he didn't make it the two years. So then he paid the full price for 11 months. I believe. It also was a new facility so he got like the first month free, you know, so I was looking for all the deals. I mean I'm very crafty and finding deal and insurance Didn't I mean, besides Medicare Medicare was the only insurance that they had which paid for like prescriptions and met, you know, going to the doctor and things like that, but they did not qualify for Medicaid. Anytime that they were they just had like I talk about this a lot because they had enough money but they didn't have. A lot of money and they didn't have too little, like, they were these like this perfect middle section where they had just enough money to barely survive.
Katie Wilkinson: Yep.
Patti LaFleur: It was yeah, it was almost harder, like, there were things. I was like, Oh, I was looking for day programs for my mom or I was looking for, you know, getting meals delivered for my mom or these kind of things and they had just enough money that they didn't qualify for any programs but too much money. Yeah. Just enough money, but not enough money that they could have survived. I mean, thankfully from a financial aspect, they lived in this space for a very short period of time because then it would have fallen probably on me and my husband to make sure because I, I mean it's my mom, I wasn't gonna allow her to not receive a high level of care. But I don't know. Yeah, I just don't know what that would have looked like,
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Katie Wilkinson: Yeah, I mean, did you and your husband like play that? What if game at all like? well, what was that like
Patti LaFleur: Yeah, I mean it, but yeah, the what if game looked like we were gonna figure out how we could have a caregiver come back in the home and My husband thankfully is off every Friday, he's at works for 10 so it was like How can we find someone who can do four days a week? And I can work full time and my husband can work full time so we can just basically pay for a caregiver and all my mom supplies to keep her home as long as possible. Which is crazy because,…
Katie Wilkinson: Yeah, it's a scary game to play.
Patti LaFleur: yeah, well, it's crazy too. Because for my parents, like something that was really important to my dad because his mom had Alzheimer's, was that he would have enough money to pay for him and his wife's care, you know, for as long as they lived because to him that was so important. So he saved and invested and did everything right but it what I mean it If they had lived as long as they potentially should have, you know, my mom passed pretty early. I think, um, then that it wouldn't have been enough, which is so crazy because he worked his whole life to have that and lived a life, a very minimal life so that he could a minimal, but happy life so that he could, they didn't go without. But like so that they could have a quality of life and he wouldn't have all fallen on me. And my husband, you know, and
Patti LaFleur: It did. I mean if my mom would have moved into memory care instead of moving in with me when she moved in. I mean we they would have ran out of money very quickly.
Katie Wilkinson: Yeah. I mean, what, what forward thinking of your dad, though? I think about that all the time, my mom passed a couple years ago and and it took care of my dad for a while. And now I'm looking at my own care for the future and what I'm saving and how I'm planning for that now, which I think is a unique
Patti LaFleur: Totally. Yeah. Oh, yeah, I'm telling, Yeah, I'm telling my friends like long-term care, insurance, long-term care insurance, Like, do I mean get your parents involved in it Now? I mean, a lot of my friends parents are in there, you know, late 50s or late 60s. I'm like, they can start paying into it, at least it's gonna be something, you know, my parents. I mean, my dad would have 1,000% paid into long term, care insurance, but it wasn't something that you like they talked about 30 years ago. You know, when he was doing his end of life planning, you know.
Katie Wilkinson: Sure. And I'm sure they couldn't have predicted. Well, maybe someone predicted, but the cost of living has got a substantially since your dad was planning for this.
Patti LaFleur: Oh exactly. I know I mean I remember when I had shared with him because he when my mom moved in with me, he's like I just don't want you to have to give up your life for this, you know all of those things and I was like well then let's look at facilities just to get an idea and I shared with him and he was like Yeah no that's not happened. Like I mean it's just it wouldn't we would not have been able. Like I also think about like how would we have paid for her? Yeah, that facility. Covers her food and where she sleeps and her care, you know, but it wouldn't cover her like, depends or her clothes or all of these other things that she would have needed to survive.
Katie Wilkinson: Yeah. Yeah. I mean it's it's a wild world out there. You, you mentioned that you're pretty and you were like, you know, got a deal on the first month in terms of like looking for care givers and memory facilities. And just all of this research that you were doing what was that like for you, were you, you know, calling places for you Googling? I'm thinking about people that are, you know, In the beginning of their journey. Now trying to figure.
Patti LaFleur: Yeah.
Katie Wilkinson: What are my options? How did you start researching?
Patti LaFleur: I'm the first thing that I did when I was like, Oh, it's happening. Like I mean I was helping my dad in their home for about six or so months before my mom moved in with me. So I was trying to get care to their home. Originally that was kind of before I knew she was moving in. So the first phone call, I made was to my local department of aging. So I just like actually I think I called like 211 or whatever the information line is and they were like, call the Department of Aging. So I called my King County Department of Aging, which I would recommend to anyone, like Google, Local Department of Aging and whatever county you live in. Because they know the resources in your county and immediately, I got like a list of lawyers. I got. They were like, you need to make sure you have power of attorney documents. They were like, basically walked me through all the things that I needed and then they're like, here, some local resources for caregivers, there are caregiver grants. So I started that whole process
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Patti LaFleur: after calling a bunch of care agencies, I found out that the level of care that my mom needed, it was going. I had to call a skilled nursing type situation, so it became really complicated. So then, I went to a good old Facebook and I wrote on my like my Facebook profile has, anyone ever used a caregiver that they've just hired themselves and who have you used and send me all the recommendations? And actually one of my friends. She was a caregiver at the time and she worked for an agency but she had been a medicist at a facility so she had training with diabetes she was like actually my client that I was currently caring for just passed away. I'd love to work with your mom. so, I was able to
Patti LaFleur: hire her through, you know, we did like the whole tax, whatever you had to do. So we were able to, I don't remember it anymore now, but we were able to hire her privately. Without having to go through an agency which was amazing. So word of mouth, I think like Ask the people around you because there are a lot of people that are because I also got recommendations for other people. Oh, my grandma. They use this person, you know, try calling there. So, word of mouth, I've heard of other people like asking at church, and sometimes like, churches have some resources or people that they can connect you with. So that was one way. The Department of Aging was just like my first stop. And then also just for the memory care facilities for my dad. We used a place for Mom. We just use that like
Patti LaFleur: Senior Care Advisor, search services. And then with my mom, I honestly just cold called, because I knew how like, I wanted her to be within the area, And so, I really wanted to make sure it was somewhere close, and I just called and wanted to go and do tours and just get a feel for myself without someone telling me what I thought, you know, with my dad, it was different because it's needs were so different. He could advocate for himself. My mom was unable to advocate, so I needed her to find a place because we did. Eventually find a memory care facility where she did some respite stays so that I could have some time to myself.
Katie Wilkinson: Yeah, that's awesome. I love the, you know, finding your local office of aging. I think that's a great like first step for people
Patti LaFleur: Yeah, and they are AARP on their website too. Now you can look and they will have local resources by state. So they will have like you can look for just Washington State. I mean it does take a little bit more digging. Same with I called the Alzheimer's Association. That was also it resource.
Katie Wilkinson: Sure.
Patti LaFleur: I called them like like two one, one local Department of Aging Alzheimer's Association and they were able to support me to specifically around like support groups and like caring for the caregiver piece. But Awesome, no matter what. And then I found this beautiful online community. It was like, it's kind of all those things fell and then I found this online community and then that's really where I've learned a lot.
Katie Wilkinson: Yeah. I mean the online community, this community of care givers on social is a really special place to be because you don't know what it's like until you don't know what it's like. And so finding a group of people that understand you is very special
Patti LaFleur: Yeah, they're yeah. They're my friends. They're my, they're my friend. You know, I met him in real. A lot of them in real life. Like these are my people
Katie Wilkinson: Totally and you are obviously very organized and, you know, you're caring for your aunt. Now, you've talked about how your organizing that you've talked about how you found care and resources for your parents. I'd love to talk if you are comfortable sharing about like systems that we're working for you by way of managing. Money and you know, Social Security income and like all these pieces, how are you managing it? What was working well and what? What could have been better in your systems for managing money?
Patti LaFleur: Yeah. I mean, honestly. Uh at first it was just like very, very unorganized. I had like a folder that I just put everything in, but as I have like, revised my systems, honestly, the best way for me to organize things is just an Excel spreadsheet. I just I'm continually updating the excels spreadsheet and things that I paid and things that I'm that I like
Patti LaFleur: That are coming and I need to pay. So for me, it's very much like an express Excel spreadsheet because it's so easy to share. It's also where I organize all the things. So I have for every person, I had like a password file, you know, and it was just all their passwords. And so that way it was, everything was in the same place and everyone just had their as far as like boulders, you know, I had a filing cabinet that was basically just caregiving and it was like, my dad's folders, my mom's folders patti's stuff. And so, that's how I organize was really just very generic but really making sure that as part of my routine and my schedule is that every Monday is like Update your Excel Spreadsheet day. So I'd made sure that I carved a day a week where I just took everything that I knew I had done that week and put it in because it's really it was too hard for me to do it all the time.
00:35:00
Patti LaFleur: Because, you know, things were constantly changing and my mom might need me or my dad would have needed me or these things. So I just scheduled a time. Like, Mom's watching Kelly, Clarkson, Patti's, updating her Excel spreadsheet, you know,
Katie Wilkinson: Yeah, I love that Aunt. Can you tell us about your Excel spreadsheet? Like what was actually in there and How did you organize it?
Patti LaFleur: yeah, mostly Yeah,…
Katie Wilkinson: How did you build it?
Patti LaFleur: I kind of had just like different tabs. It was like the first tab was well for my aunt I guess it's easier to talk about because now with my parents it's been a while so for my aunt, it's like expenses. So like all the things that we use her debit card for to purchase. So I put it in there, what the price was, and what I bought. So that way when she asks me, I can be like oh toothpaste but I don't write everything down but it's easier for me than keeping all these receipts and having them somewhere. Like it's like it's all just in there because I can't always find every receipt at every moment. And then the next one is like bills. So what are the things like the medical bills as they're coming in? And have they been paid and when they've been paid and who paid them? Because she's still really wanting to pay for things. So she's writing some checks. So when are they paid?
Patti LaFleur: And then, like on hers, it's like, I have her passwords in that same file. So, that way, I can have like her Social Security number easily access because constantly, when I'm calling to talk to someone, they're like, we need the last four of our social, and then, as far as, like, appointments and stuff, that's in a separate calendar, but mostly, those are the big things that I have organized for her. And then I just have a folder that has, you know, her will her power of attorney. Her healthcare directive of copy of her pulse form, like I can easily
Patti LaFleur: Just grab it typically. I actually have like a purse. That's just like the perk. Like it's a big bag purse that I use. When I take her places and I just have it pretty much pre-loaded with those things. I don't even keep them in the file because when we go to the doctor's office, if it's a doctor I haven't been to they're gonna ask me for a power of attorney. They're gonna ask for a copy of the pulse so I just have it all. There. So I just if something happens, if they are facility calls and like she's going to the hospital, I can just go. And that's what I had with my mom. My mom had her backpack and it was like, Okay, when something happens, I don't have time to go look for her power of attorney. I don't have time to look for her medication list. I just can grab this and go. Oh, that's another thing, that's on the Excel spreadsheet, is a copy of her medication list, so I just have everything that I could need.
Patti LaFleur: In an Excel spreadsheet because then I can access it from my computer. I can access it from my phone like it's just so much easier, if something happens.
Katie Wilkinson: And I love that, like grab bag. Tip I think that's good to you know, instead of keeping it in a filing cabinet,…
Patti LaFleur: Yeah.
Katie Wilkinson: it's like if it's going with you all the time, keep it in a backpack that goes with you.
Patti LaFleur: Exactly exactly. Especially the medication list. I feel like that was probably asked for more than anything else. You know, when there's an emergency right? Like and I'd always had like extra for my mom, she was a diabetic, right? So it always had like extra snacks or some sort of drink that could bring her up really quick. You know, we needed to just always be prepared because not only was they're the piece around the dementia, that was challenging, there was her diabetes that was important to be taking care of. I also have those cards,…
Katie Wilkinson: Yeah.
Patti LaFleur: and then like, it says, like I'm caring for a loved one with dementia so that way, I can have those easily accessed, so that I could give them to people. So that way, they were more patient with my mom, people were pretty patient because she for the last year, was in a wheelchair and always carried her robotic dogs. So, I think they kind of were like, Oh, gotta be patient with this lady, but with my aunt, she's very she presents as very much Doing great. But people need to be more patient with her because it's gonna take her longer to process. So I carry those cards with me so that I can pass them out.
Katie Wilkinson: Yeah, I love that. I can also like sense the schoolteacher in you with some of these tricks.
Patti LaFleur: Yeah, for sure. I am definitely a kindergarten teacher.
00:40:00
Katie Wilkinson: Yeah, but everything you just said I think is, you know, super helpful to people that are experiencing this same thing.
Patti LaFleur: Yeah.
Katie Wilkinson: With your Excel spreadsheet. Is there any? Limit like it sounds like you use Excel. And are there any limitations or things? You like feel like are missing or you can't do. with this sort of like, you know, self-made system,
Patti LaFleur: I would love something that could also include some more like space for notes. You know. Like what I found is that, yeah, that's really helpful for those pieces. But when I was caring for my mom, something that was really challenging was I wanted to be able to take notes like when we were at the doctor's office or when we were at with physical therapist or anywhere we were. And I would I tried a lot of times to take notes on my computer and put them in a word document and have them be easily accessible, but it never really the system never works. So then I, you know, just defaulted to putting it on a piece of paper, but, you know, a notebook is helpful and I'm very good about going back and I know both, but it isn't as easily accessible. And so when we're, we would be at the doctor and they'd be like, well, what did like when did she when did you notice it? I'd have to go look in my notebook, find the page. I mean, it was just
Patti LaFleur: Not easily accessible to have notes, and a spreadsheet, and some sort of way to track everything in the same location.
Katie Wilkinson: Yeah, I feel like having a calendar and the notes and the spreadsheet all linked makes it easier. So when doctors says What happened on at your last visit, you know, on March 25th this happened, right?
Patti LaFleur: Exactly, or yeah. And like for us we were doing a lot of tracking with my mom around her blood sugar. So they'll be like What have you noticed about her blood sugars? And it's like, Well, that's on a whole different spreadsheet. I have to find, you know. So it was just Complicated. But it is complicated, right? But I would love, I would love a system that put it all together.
Katie Wilkinson: and,
Patti LaFleur: I mean, especially when people are living with dementia or Alzheimer's and they have some pretty high medical needs that you also need to be tracking
Katie Wilkinson: totally, we again givers is you know, we're young at this point but we are on a mission to make just like the financial piece of caregiving
Patti LaFleur: Yeah.
Patti LaFleur: Yeah.
Katie Wilkinson: Now on on givers you can you know, sort of basic. But we're starting on like a forecasting tool just around budgeting and like how much money you need to be saving or…
Patti LaFleur: Yeah. Amazing.
Katie Wilkinson: you know, where your money is going etc. And but on on this roadmap is more tools. Like what you've just described to be able to link all of these things and…
Patti LaFleur: Yeah.
Katie Wilkinson: and share it amongst. You…
Patti LaFleur: Other. Yeah,…
Katie Wilkinson: you and the rest of the care team. So,
Patti LaFleur: I feel that is the piece that was missing with my mom's Expelt and with the Excel spreadsheet with my parents. It was that. Yeah, it then I'd have to go into excel and I know I could, there's probably a way I could have shared it with my sister, but I don't think she had an outlook. So then, I think I might have had to move it to Google. I mean, it was just one of those things and I, I am such a like Microsoft person in. That's what I'm comfortable with that, like, people were like, well, try Google Drive, but then Google, I'm not as familiar with Google Drive. And so, then that became complicated for me and it's not what my emails through. So it just became something that I was. It was another thing to manage that I wasn't ready to manage.
Katie Wilkinson: Totally. Yeah, our hope is to make make this easier for for a caregivers.
Patti LaFleur: Yeah, you will you guys will?
Katie Wilkinson: Do you know now that you wish you knew at the beginning of your caregiving experience?
Patti LaFleur: Um how important support is, I think that for me, I thought, especially in the beginning that I could do it all myself and although with my parents I had to do a lot of it myself. I had a lot of great support along the way from just people that I could check in with people that I could vent with people that got what I was going through. And I wish that I would have thought about support more even from just like an emotional aspect for myself. I have amazing friends. My husband is great but I just really tried to do everything myself and I wish that I would have thought more about like Who are the people that could be supporting me in this, and what could they be supporting me with with my aunt, it's very different because I've gotten through this and I really am setting boundaries but I had no boundaries and caring for my parents and I had to actually a really hard time giving up boundaries, right? I was like, Wow.
Patti LaFleur: I got it. I got it. Like, it's easier for me to just do it, but there are things that I could have. When people ask me, like, How can I help you? I could have said, Yeah you can go to the grocery store for me like thank you. I will pay for it. Just you need to go you know like I could have come up with things that would have been helpful. Yeah you can find someone to clean my house. You know. Like those things I did end up finding a house cleaner that I liked. So that was really helpful. I mean that was huge but I wish I would have had support from the beginning because maybe I wouldn't have gotten so burnt out with both. Maybe I would have been able to continue teaching and we could have thought about starting a family. You know who who knows where what that would have looked like if I would have felt so burnt out, So quickly.
00:45:00
Katie Wilkinson: it, I think it can be hard to like, You look back and you say I wish I had asked for support earlier but early on it's like hard to ask for like to know how to ask not even…
Patti LaFleur: Exact.
Katie Wilkinson: what you're asking for. But like this level of pride or like guilt or I don't want to put words in your mouth but for me it's like I want to do it.
Patti LaFleur: Ly. Yeah, yeah.
Katie Wilkinson: I guess any like any words of wisdom to, you know, people that are going through right now on like how to move past that.
Patti LaFleur: I think that for me, I just wish I would have accepted like I wish I would have just like put my pride to the side and just like Looked around and really just know that like It's gonna be so much easier if people do help. And I do think that, if you do find support emotionally, even if you don't have support in person, or someone that's gonna help you with your groceries, or these things, if you have emotional support. So, find a support group, find one person that gets it. Then you can do it. You know, like the emotional piece is just as important really, as the physical piece, you know, the financial pieces different because there is such a barrier and the cost and work and all of those pieces. But like emotionally, if you can find someone that you can talk to on your hardest day, it's huge.
Katie Wilkinson: Yeah. I mean, and someone so much of it is interconnected, right? The physical piece, and the financial piece, the emotional piece, like, financial stress, It's stress and all of it, sort of layers on top of itself.
Patti LaFleur: Yeah. Yeah and for me it was really like when I made the decision. I mean I didn't really make the decision but when I Finally was like, I'm a caregiver and admitted to it. It was like, I really had to be like, Can I emotionally physically and financially care for her? Like, it had, I had to have all three of those pieces in place. Like, I wouldn't have been able to be as successful caregiver if I couldn't emotionally do it or if I couldn't financially do it, or if I couldn't physically, I mean we had to lift her by the end, you know, my sister. And I talk about this a lot like She was like if I was caring for Mom, I couldn't have done it. Like it just wouldn't have happened. I lived in a second story apartment and also I just don't think I can lift it her every day.
Katie Wilkinson: Yeah, I like those three sort of three, check marks to make sure that,…
Patti LaFleur: Yeah, for sure.
Katie Wilkinson: you know, you're taking care of you and…
Katie Wilkinson: taking care of your care recipient.
Patti LaFleur: Yeah, for sure…
Patti LaFleur: because it was a partnership. I had to be able to show up to, you know what I mean? Like if I wasn't able to show up, she couldn't be successful in her care, you know, care. Receiving
Katie Wilkinson: Normally.
Katie Wilkinson: Totally. And I think you barely just answered this a little bit, but we like to ask everyone and you know what's what's your top tip for other care givers?
I had to ask myself, ”Can I emotionally, physically, and financially care for her?” I had to have all three of those pieces in place. I wouldn't have been able to be a successful caregiver if I couldn't handle it emotionally, financially, or physically. It was a partnership—I had to be able to show up in those three areas so she could be successful in her care receiving, too.
Patti LaFleur: I mean find support is always my top tip and don't be afraid to ask for help. But also I would say that like try to find moments of joy like find those moments and those are the moments that are going to carry you through this journey. It's really hard. It's really heartbreaking. It's really challenging to watch someone that you love lose pieces of themselves, but there are moments of joy and find those moments and live in those moments as much as possible. You don't always have to be doing something with your loved ones. Sometimes just sitting next to them and holding their hand. Can be just as beautiful as anything you're doing together.
Katie Wilkinson: Yeah, I love that and I think, I mean, we're talking about, you know, recording things in a place to take notes. I think something like that is a, you know, a good thing to be recording and remembering I think Chris's life with Grams does a great job at you know, like documenting her gratitude and I think similar to what you just said, shared documenting moments of joy as also very important.
Patti LaFleur: Yeah. Yeah, Chris does a beautiful job of documenting, the love that her and her Graham share even and just like the smallest moments.
Katie Wilkinson: Totally. And if people want to follow along with you now and and, you know, your ongoing Journey and as a caregiver and just your life. Where can they find you online?
00:50:00
Patti LaFleur: I am Miss Patti Cake and Misf, Patti B. A K E on Instagram and I am care partner Patti on Tiktok.
Katie Wilkinson: Love it. And we will be sure to tag you, you know, on both as we publish this. And thank you so much for like sharing so much about your journey and really digging into like the nitty-gritty of it. I think it's really helpful to to other caregivers.
Patti LaFleur: Yeah, thank you so much for having me. It was lovely and I'm so excited for what you guys are doing.
