Caregiving with Dignity, Part 1: Domer Caregiver Stories

Episode Topic: Domer Caregiver Stories 

Listen in to a conversation with LisaMarie Collins ‘07 J.D., Ray Fraser ‘19 MBA, Black Alumni Board Student Relations Director, Francesca Milles-Dave '01, and moderator LaDawn Burnett ‘12 J.D., Black Alumni Board Alumni Relations Director, about the joys and challenges of caregiving for our loved ones, through all the ages and stages.

Featured Speakers:

• LaDawn Burnett, '12, Alumni Relations Director of Black Alumni of Notre Dame Board
• LisaMarie Collins, '07 J.D
• Ray Frazier, '09 MBA, Student Relations Director, Black Alumni of Notre Dame Board
• Francesca Mills Day, '01, Senior Manager, Unilever

Read this episode's recap over on the University of Notre Dame's open online learning community platform, ThinkND: https://go.nd.edu/ba3870

This podcast is a part of the ThinkND Series titled Caregiving with Dignity. 

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Transcript

Introduction to Caregiving with Dignity and Meet the Panelists

LaDawn 0:06

Hi, my name is LaDawn Burnett. I'm a 2012 graduate of Notre Dame Law School and the Alumni Relations Director for the Black Alumni of Notre Dame Board, also BA of Indy. And I'd like to welcome you to our new series, Caregiving with Dignity. as an active Notre Dame alum, I know Domers, use the Notre Dame network to get jobs and progress professionally in their careers, and that's wonderful. We should do that. We should continue to do that. but it seems to me that there's a real opportunity for us as a community to support each other in more important and personal aspects of our lives. as our society faces the emotional, financial, professional and spiritual pressures of caring for an aging or sick parent or spouse, a loved one, or child, many in our Notre Dame community need support and just practical advice. as we progress through this series, we will learn a lot. We will hear DOMA caregiver stories. We'll get some tips on handling, the financial and legal issues that caregivers encounter. We'll navigate cultural concerns, around making caregiving decisions. We'll also explore how to preserve generational family history and wisdom. And we'll get some guidance on how to develop an all hands on deck, nobody left out family caregiver approach. On behalf of the B. A. of Indy, we hope that you'll find your experience with the Caregiving with Dignity series to be insightful and engaging, and that you'll follow along with us on Think Indy. I'd also like to take a moment and express our sincere thanks and appreciation For the Notre Dame Alumni Association for sponsoring our Caregiving with Dignity series. I am absolutely delighted to have with me a wonderful panel of three Notre Dame alumni First, we have Lisa Marie Collins, a 2007 graduate of Notre Dame Law School. Welcome Lisa Marie. Hi. We are also joined by my colleague on the Black Alumni Board, Ray Frazier, a 2019 graduate of the Mendoza College of Business, in the MBA program there. And he's also our student relations director for the BA at Indy. Welcome, Ray.

ray-fraser_1_02-20-2025_191338 2:42

Nice to be here.

LaDawn 2:43

Lastly, we are joined by Francesca Mills Day, a member of the class of 2000 and one. Welcome, Francesca.

francesca-milles-dave_1_02-20-2025_191332 2:50

Hi, everyone.

LaDawn 2:52

Many in our community have served as primary, or as one of, the primary caregivers for, a loved one. It's a tremendous responsibility that brings a lot of challenges. To our lives, but also moments of actual joy. It can be a lonely responsibility that leaves people feeling isolated and unsure of who to turn to for support. But there's absolutely real power in sharing our experiences as a community. To start out, I'd like for each of you to share a little bit more about yourselves. Lisa Marie, if you could start us off just sharing, your hometown, whether you're married or single, if you have kids, what you do for a living, and briefly describe your caregiver situation, who are you caring for, and whether they live with you.

lisamarie-collins_1_02-20-2025_191338 3:39

Sure. Thanks, Ladan. I'm happy to be here tonight. I live in Brooklyn, New York. I am a Notre Dame law grad. I'm currently practicing. I'm a litigation partner with Mintz Levin, a law firm based in New York City. I have two boys, seven and ten years old, very active very full of energy and I'm married as well and I'm caring for both of my parents my mom 74 and my dad who is 75 and we all live together here in Brooklyn.

LaDawn 4:08

Great. Thanks, Lisa Marie. Francesca.

francesca-milles-dave_1_02-20-2025_191332 4:11

Thanks, everyone. Really happy to be here. My name is Francesca Mills Dave Notre Dame class of 2000 and one. I currently live in New York City in Harlem. I take care of my both my mother and my stepfather. My mother is 70 and my stepfather is 85. And we've been doing this for a little while now. Really excited to share my story. Thanks so much, Ray.

ray-fraser_1_02-20-2025_191338 4:33

I live in South Bend, Indiana. I'm in a long term relationship, so we live about, two blocks away from campus, and I'm caretaking for both my parents, my mom, who's 76, and my dad, who's turning 91 next month as well as, my brother

LaDawn 4:52

great. Thanks, Ray. I think it would be helpful for our audience if you could each talk about how you became a caregiver. Lisa Marie, would you like to go first?

lisamarie-collins_1_02-20-2025_191338 5:03

Sure. I'll start us off. caregiving is not something that was on my radar until it becomes on your radar. So my dad has pulmonary fibrosis, a terminal lung condition. He was diagnosed in 2016. And that condition generally has a two to five year prognosis upon diagnosis. So when he was diagnosed, my mom was in very good health and I just kind of assumed that my mom would care for him until his death. And in the course of that time period, my mom started showing signs of dementia. And it started to become clear that my dad was going to live longer than two to five years, which was a huge blessing, but that my mom's dementia would progress. We didn't know at what pace and that she would likely not be able to care for him. So at that point, I made the decision that we should, all move in together so that I could care for both of them when the time came that they could not care for themselves.

LaDawn 5:56

Wow that's really generous of you. What about you?

ray-fraser_1_02-20-2025_191338 6:00

Yeah. So, on my side, my parents are, getting up there if you would. And my dad's showing early signs, dementia. And I think like when it came to say caregiving, like Lisa Marie says you don't plan for it, but you step up when your family needs you. I was always, the planner, in my family, if you would. So it was always trying to, think a couple steps ahead, for both my parents, like what they might need in a couple of years, because when age starts to catch up with you, it's not like it happens. Gradually. Usually once it starts, it can slide pretty quickly as it did for for example, my dad, especially with his memory used to just be kind of like the rock of our family. And you couple that with my brother he was born type one diabetic and now has end stage renal disease as well as class three heart failure. He's been in and out of the hospital for the past two years. You actually just checked back in earlier today and yeah, no one like really sets up a road map for you. But when you get in the situation, you're just trying to do the best that you can. And just remember and to take it one day at a time and also you know, Just try not to put too much on yourself and just always remember that you're doing all that you can.

LaDawn 7:33

Great advice. Right. Thanks, Francesca. What about you now? I know that you've been caregiving for a while. Let's hear your story.

francesca-milles-dave_1_02-20-2025_191332 7:43

My caregiving story started a little bit a long time ago. My family, everyone is assigned jobs. And you're assigned jobs towards what is denoted as your innate ability when you're like seven, right? And that is your family's job. That is your job within our family for the rest of your life. I know no one who's ever been able to switch out their jobs. But my job was was more of going to hospitals and funerals. And that transitioned into more of caregiving, right? I, again about maybe a couple years out of Notre Dame. My mother showed signs that she was no longer able to care for herself in an appropriate way. So then she moved in with me then. And then most recently, about a year and a half ago after my stepdad who I've been caregiving for long distance, it became apparent that he was no longer able to live by himself. And I moved him into my home also in New York.

LaDawn 8:34

Caregiving responsibilities differ depending upon your parents situation and also your own personal circumstances. So I think it would be helpful for us to hear what a day in the life looks like. Maybe not an average day because I'm sure every day is different, but if you could just share with us Just a glimpse into what the day to day is like because you all have demanding jobs, and I know a lot of people were, just how do you do it?

francesca-milles-dave_1_02-20-2025_191332 9:06

LaDawn, you, there is no typical day. Every day is different. Every day you wake up and you're like, we're going to do X, Y, and Z. And none of those things are important. Right. You try to have some semblance of a routine just to keep yourself sane, because that is your number one job and priority. When you wake up in the morning, it was just, how do I maintain my sanity throughout the day? Unfortunately, you know, there are times where my mom can do certain things on one day and can't do it the next day. It's quite amazing, right? And you don't know when those days are going to happen, right? So, what you really, as far as a day to day, it's go for me. I go to the market in the morning first thing because that's my alone time, right? I do that. I come back, I shower, get ready to go to work either hybrid or in the office. And then if I'm at home, fortunately, I was smart enough to not listen to my mom and get an aid. That was the single smartest thing I ever did. She doesn't like them. She complains about him every day, but that is so much better. Than it's all falling on me. And I say that and this is, I don't know what this tangent is coming from, but here we are. I say that because I felt that I stopped being her daughter. I was her nurse. I was her aid. I was her housekeeper. I was her, whatever I was, but I was no longer her daughter and I need to reclaim that. So once I reclaimed just being a daughter, yes, I'm a daughter who does all these other things, right? But I don't want to just be those jobs, right? So for me, a typical day is Just embracing whatever the day has for me, it could be everyone's playing nicely. And that's why I like to say everyone's playing nicely. There's no new mystery things happening and I can go to work and I can come home and it's great. But it's really just rolling with the punches and just really just trying to maintain like this is not catastrophic, for me it's not holding myself down to a schedule other than my breaks for sanity, my breaks away. But for me there is no typical day, right. you plan for it, right. Even if we have a whole day planned out, it is just not that it necessarily happened according to plan and it took a long time to deal with that. And really embrace the, oh, okay, adventure, and that, that motif and that model versus, it would be enrichmented on a schedule. And I think that's the first thing you have to divorce yourself from being on a schedule for having any control and just rolling with it. Yeah.

ray-fraser_1_02-20-2025_191338 11:37

I don't like totally agree with that. Like sometimes I could be in a meeting. And my dad will call me a couple of times and I call him back and, he's my best friend. Right? you know, hanging out, you give me words of encouragement, things like that. And then, a couple days later, I'll pick up that phone. I'm getting, cursed out because like he forgot where he put some shoes and he thinks that I took his shoes. And I gotta tell him that, I'm in Indiana, you're in Connecticut, I didn't take your shoes. Then I gotta call my mom and then she'll go find them sometimes if my dad does call at this point, like I'll shoot her a text first, to say okay, what kind of mood is he in before I pick up the phone sometimes? But yeah, I'd say it's a little unpredictable.

LaDawn 12:27

Yeah, and right. I know that there are some tools that or tools or resources that you use to sort of lighten the load. Francesca, you mentioned getting a maid. Ray what kind of. Of tools that you use.

ray-fraser_1_02-20-2025_191338 12:43

Yeah. So, for example, I use a virtual assistant names Noel. She helps to pay all of the set up all the bills kind of like on auto pay from my parents and troubleshoot anytime, something, isn't say going through. I remember say sometime last year, all of a sudden, my dad didn't like direct TV anymore. She was able to help get Xfinity in there because again, when they get older they, at least for my folks, they fixate on things and all of a sudden, nothing can happen until that one thing is taken care of. So thank goodness for well, she's able to just, spend the time that I unfortunately didn't don't have is to get on the phone with Xfinity come back to my dad with all of the prices. And then, have all of those separate conversations and, get them in a good place. The other thing was having a property manager as well. I'd say other than fixiating at least where my parents they're pretty proud, people, they will be the first to tell you that they immigrated here from Jamaica in the late sixties and seventies. They've seen it all. They can deal with aging. They don't need any help yet. if a foot of snow drops in Connecticut, like they're stuck in the house and they can't go anywhere. So. Nowadays, I might get a nice little text message or call from my mom to say, thank goodness for setting up that property manager because they came and shoveled the snow and we didn't know it was going to snow, but it snowed and everybody else is stuck in their houses, but we can go in the driveway. So I would say tools like that. A virtual assistant is amazing because they can research all these things for you. Like she was able to find the property manager that we now use. We have a cleaner that comes in like at least once every other week, I found that's like very helpful. So that when guests come over, they feel comfortable visiting, So yeah, those are some of the things that I've found to be helpful.

LaDawn 15:04

Great. Now, Lisa Marie I know that you also are encountering, these shifting changes and situations caring for someone who has also has dementia. Can you talk a little bit about your experience?

lisamarie-collins_1_02-20-2025_191338 15:17

Sure. So my mom is in, I would say the middle stages of dementia in that I would say her short term memory is essentially gone, but her long term memory is intact. So by my kind of observation, I think she retains new information for about 30 seconds before it completely disappears. What I understood dementia to be before. My mom had dementia was really like it was just forgetting and it's just so much more than forgetting and you don't understand it until you're living it how much rapid forgetting which is what they call it impacts a person And their ability to function and their ability To just kind of live a live their day to day life. The thing that surprises me about the fact that her short term memory is gone is that she is still very much herself, right? So she still wants to do all of the things that like my mom's really you know What somebody would call a busybody, right? Like she's all up in everybody's business. She still wants to be in your business She's gonna forget it 35 seconds later, but she still wants So it's it's really, it's been important for me to remember that, she's still my mom. She's just my mom who can't remember anything. So to the extent that, there's things going on in the house and the kids have activities and whatever it is that's going on, I should include her in those things just the way I always have. Right. And I find that when I do that and when I'm really intentional about that, her mood is better, her spirit is better. So that, that's something that I really, and it, I really try to focus on that. It's really easy not to write. It's really easy to just go on about your business and say, she's not gonna remember a single thing anyway, I'm planning my son's birthday party for this weekend. I tried to involve her in the planning like I would have a couple of years ago because those are the things that really will keep her going.

LaDawn 17:04

That sounds great. That sounds great. I'm interested in hearing how. Caregiving has affected your relationship with your parents compared to before they got sick to now. What does that look like for you guys?

lisamarie-collins_1_02-20-2025_191338 17:20

I've always had a nice relationship with my parents. So when caregiving became something that needed to happen, it was an obvious transition. And as I said, I'm caring for my kids, my little kids, as well as my parents at the same time. When we all moved in together, I was parenting everybody, right? I was acting like everybody's mother in the house. And I learned very quickly that my parents really resented that. And I had to really put myself in their place and think, if my sons start mothering me in 30 years, how would that make me feel? So I had to really Get right with myself in that, I'm helping them with their health challenges, but I'm still their child and they are still my parent. And I find that once I was able to right that imbalance, it really, went a long way in making us all living together and the caregiving and all of that a lot smoother they weren't resisting me in the way that they first were when we all moved in together.

LaDawn 18:17

That's really interesting. I know that people who care for their parents often encountered this shift in the parent child dynamic. Where, they feel is that the roles have been reversed. But what you're sharing is that You may be helping them through this particular phase of life, but you're still maintaining the respect and the boundaries and the recognition that, you know that they're your parents and having them see that you still give them honor in that way, I think is really important.

lisamarie-collins_1_02-20-2025_191338 18:48

And respecting their independence as well. It's really easy to think okay, you're sick and you're old and I don't want anything to happen. So I'm just like all over them the way that I would be with a child, but they've been living as adults for 50, 60, 70 years, right? They don't need me hanging over them, even if I want to, and maybe even if it's needed, right? It's finding the right balance of maybe kind of doing it, but pretending you're not, just figuring out how to really respect those boundaries and make them feel seen in that way.

LaDawn 19:16

I know that there are those in our community that don't have the best or didn't have the best relationship with their parents growing up and so I'm interested to hear your guys's thoughts on how do you become a caregiver for a parent when you may feel that parent wasn't the best parent to you growing up?

ray-fraser_1_02-20-2025_191338 19:37

Aging for my dad, it's kind of like definitely brought us together in a lot of ways because we definitely had a lot of run ins like, growing up, he was definitely pretty strict and, super independent. But man when he like first started to fall down, for example or the first times he'd be out and he, wet himself, he couldn't make it to the bathroom. How that say, humbles you For him to ask me for help, he's, relied on me a lot more now. And he's also opened up, a lot more as well. Now I also have to like, balance that with kind of like setting fine, say boundaries with my parents because of that childhood trauma. And just so that like I keep my sanity. So that's one of the things I always advocate for is especially if you've had, not the best relationship over time with your folks. And there is, some trauma there to factor that in just so that okay, when are you like, say, reaching your limits so you can step away. So, for me, when I'm home, for example, being home can be a little triggering. for my anxiety if I'm there over a certain amount of time. So I always go for no more than say, five five days max, but usually between three or four. If you would I always make sure when I'm home, I take my parents to church. For example, I drive them, I dress my dad, I bathed my dad and we do things like that. We take pictures now. That's another thing I would say is that as they're getting older, pictures become like super important. Cause you really don't know how much time you really have and where their condition is going to go next. For example, my brother was, working independent, say, last year and this year he's lost over, 50 at this point, since he started dialysis. In November, and yeah, so those are some of the things that I always think about. I think about boundaries. And I think about, cherishing time.

LaDawn 22:14

Thanks for sharing that, Ray. Francesca, I know you have some thoughts to share as well.

francesca-milles-dave_1_02-20-2025_191332 22:18

Yeah Ladan, thank you. And wow, Ray. I'm an only, right? So I innately have a very close relationship with my mother. But man, was she tough. Man, is she tough. Let me use Frances, she is still tough. Despite all these things, this lady is hard. However, it's it's interesting because I kind of morphed into her how she would encourage me and how she would bird dog me. I started encouraging and bird dogging her, you know what I mean? Because it was relentless, but because she knew I could do better. So use that same, and it's weird, almost using the same words, the same type of motivator to, Hey, you can do this or, this, but it's relentless, right? definitely with that line. But it's interesting. So I have both my, I have both my mom and my stepdad with me now and my stepdad who I was caring for a long distance since Notre Dame, right? Has a different story, right? So whereas mom was super cagey, the only reason why I knew anything about our health conditions is because I decided at one point about seven years ago to start going to her doctor's because I didn't think she was being truthful.

background 23:26

I

francesca-milles-dave_1_02-20-2025_191332 23:28

don't understand how nothing has changed because all these other things have occurred since your last appointment, but okay. So then I started attending her appointments with her, again, despite protest.

ray-fraser_1_02-20-2025_191338 23:38

So important, right?

Navigating Financial Challenges

francesca-milles-dave_1_02-20-2025_191332 23:39

So, but then also equally as important, if not more important was developing the relationships with the doctors. Now understand there's HIPAA, there's understand they can't share with me, but I can give them information. So for appointments, because Got to be respectful. I would just give her posing questions. Not how are you feeling? Because it's fine. But did you throw up recently? all these other things that don't equate to fine, right? So I guess that was one thing just to be able to manage that, which even further constrained our relationship because now going back to Lisa Marie, I started a mother and her, which was just she wasn't a fan of still isn't right. But my step is interesting because my stepdad, on the other hand, is older, right? So he's 85 now. But he's always been open with his health situation and we've walked side by side throughout it. So there was no secrets. There are no secrets. And it's interesting between the two of them where she's like super cagey about everything. It's not that he's like open or, very, bolster us about what all these conditions. But he's he realizes, hey, I can do better with you with me.

background 24:50

Yeah.

francesca-milles-dave_1_02-20-2025_191332 24:50

So it's interesting to reconcile those things.

LaDawn 24:53

All great points. I want to shift a little bit to talking about the financial burden or impact of being a caregiver. If y'all could just, talk about What that's like a lot of people underestimate that aspect of caregiving. So what's been the financial burden for you guys as caregivers, what types of sacrifices or lifestyle changes have you made to make this work for you and your parents and your loved ones?

lisamarie-collins_1_02-20-2025_191338 25:21

I want to title this section finances rather than financial burden because there's so much to think about when you start caregiving for your parents because you start off thinking just about caring for their health but there is a financial aspect of it that if I had to do everything over, I would do 100 percent differently. You're the child, right? You don't really ask your parents questions about their finances. You have to have some really hard conversation. So if I could do this over again, the day that my parents and I determined that we would kind of enter into this caregiving relationship, I would have sat down and said, I need to understand what your finances are, what your expenses are, what your debts are, what your savings are, what your retirement looks like, what insurance policies are available. Do you have long term care insurance? What is that policy? I would take that policy in my hand and I would read it and have a real full understanding of what that policy covers. If you are dealing with a parent who is suffering dementia, I would immediately make sure that you call the long term care insurance policy holder and say, hi, I'm the daughter. And if this. Payment is missed one month. I need to be notified before you cancel this policy. Get that in writing. I went through this whole rigmarole with that. Luckily, we did not lose the policy. But it was a close one and we're going to need that policy. And I think you have to understand, for example, my parents live with me now. But I can pretty much be sure that at some point, my mom will need memory care. And she will not be able to live in the home with us. And I'm starting to look into what those costs are. Medicare does not support memory care. And it's from my, Google research, it's looking like 6, 000 to 8, 000 a month. some dementia and Alzheimer's patients could stay in memory care for five, six, seven years. I mean, who, who can afford that? Very early on. What the situation is what you will need and how you will bridge that gap and there are resources out there You know, there is whatever resources your parents may have there's Medicaid. There's all sorts of things available It doesn't happen overnight and you certainly don't want to figure it out when it's needed You can't you want to have a plan in place.

LaDawn 27:31

Great. And just for the benefit of those watching who may not know, what is memory care? What does that involve?

lisamarie-collins_1_02-20-2025_191338 27:37

Memory care is a, out of home facility care facility specifically for dementia and Alzheimer's patients. It's different than a nursing home because there is special care that goes along with Alzheimer's and dementia. So it's a, a memory care facility.

LaDawn 27:50

Great. Thanks for that. Ray

ray-fraser_1_02-20-2025_191338 27:52

Lisa Marie did a good job in terms of like when she mentioned figuring out where your parents are when it comes to the finances. So with my dad, he was paying all the bills. I'm taking in, we have a small rental property. So he was just taking everything in and managing it all on his own until he was about 75 or so. That's when I would say I started to, say, take it over slowly, but it wasn't quick. It actually took a couple of years, honestly, before he gave up all the reins, if you would. And they were, you know, some and it's never really say shouting matches with your parents because they do the shouting and you're kind of like the child, I got a few, point the finger, what are you trying to do? Trying to take over and things like that, but you got to stay with it. And I thank goodness that we did because now we're not in that situation where, say, God forbid, if my name wasn't on, say, the bank accounts, even say even when it comes to, his pension get him a credit card or a debit card so that cause he used to just deal with cash a lot. That was how his generation was, just cash. He didn't like credit cards or anything. And. But now at his age, he'll want, say, everything in all 50s or 100s because his hands shake a lot,

background 29:22

so he

ray-fraser_1_02-20-2025_191338 29:23

can't deal with the 1s or the 5s,

background 29:24

he just

ray-fraser_1_02-20-2025_191338 29:25

likes to give the person a 100 bill and just take the change. But then he loses all the change. would say Luckily, with having the rental property, even the property manager that we have, their pay comes out of that. So having passive income was very helpful in our situation to help. My dad also had, pretty good pension after working with the Department of Transportation, for over 20 years. But when you think about the cost of a virtual assistant thank God we live in a remote or digital world because that's only a few hundred, dollars a month. we wish we could do live in care, but my parents didn't have long term insurance, and live in care can get pricey pretty quick. Just having a person come in once every other week to cook a meal do the laundry, take my parents grocery shopping if they want that. That's a couple of hundred just for one visit.

lisamarie-collins_1_02-20-2025_191338 30:28

The average cost of in home care is about 600 per day.

ray-fraser_1_02-20-2025_191338 30:32

Per

lisamarie-collins_1_02-20-2025_191338 30:33

day.

ray-fraser_1_02-20-2025_191338 30:35

So it's man Either I need to make more money or it's like you got to come back in another life with something else, and then I'd say the other biggest thing is health. I think one of the best things my parents did was because they have a big yard. My dad's always been good with his hands. So he's always in the yard. No matter if it's sunny, cold, he'll put on his little big coat. He has this yellow hat that he likes and he just goes out in the yard. Even if there's struggling snow, he'll take two hours to put on his boots. Then when they're all done, that's when he makes it out there and he gets his lunch. And then he takes two scoops report to my mom that all the work's done. You gotta laugh at it sometimes, you know?

lisamarie-collins_1_02-20-2025_191338 31:23

I would just add one thing, and I know Ladan on a different part of this series will focus on estate planning. But that's another part of caregiving that I would say, get in there early on this, as soon as you figure out that you're going to be caregiving. Talk to your parents about what their will is, hire an estate planning attorney who focuses on elder care. And that person will help you get all of the documents that you need in order. Most importantly, a financial power of attorney and a health power of attorney.

francesca-milles-dave_1_02-20-2025_191332 31:52

Yeah, I'm going to pick it back off of you, Lisa Marie, because I've shared about my mom and my stepdad who are here with me, but unfortunately, my dad passed away last year, or in 23, right? So to me, it was yesterday. It could have been 20 minutes ago as far as I'm concerned. Anyhow, but I didn't have that same. Relationship with finances that I do with my parents out with me now that have known for at least some degree that they can no longer handle things right for a long time, right? I'm talking 10 plus years, right? but my dad went to work the day before he died. He's gonna go to work that night, we never had those type of conversations. He never wants to talk about final arrangements. I remember last time I saw him, I brought it up. He was like, Oh, why are you rushing this? Not rushing his dad, but I need to know. He's whatever you decide is gonna be perfect, baby. Baby girl, let's just talk about this. We got more yesterdays than tomorrows. Let's focus on today, right? even with that said he thought he was protecting me. I heard, a real super loud because right when you're saying a name on your bank accounts My dad had all my information on his accounts. Guess what happens when you close down accounts. You don't have access No one told him that because he would have made other decisions So not understanding, hey, before they die, if you need access, you got to make moves then before the death certificates, or you're completely locked out, even if your name is on the account he's of a certain generation. It's his name. All these other people can maybe have access if I can't, but it's mine, right? him not understanding that it would be an issue. Cause he's did it that way, multiple ways, you know what I mean? And so it's also educating yourself to Lisa Marie's point I use online support groups to find new things because they may be five minutes ahead of me or. 10 years ahead of me, just these things that, a lot of folks think they're doing the right thing. I think we summary similar to you. Life insurance policies is another thing, right? No, I need copies. I have a digital in soft copies, right? No, we're not playing any games here. this is gonna be the worst time in the world. You're not gonna have any time to figure anything else out.

background 34:08

Right.

francesca-milles-dave_1_02-20-2025_191332 34:08

You are going to be over capacity

background 34:12

and

francesca-milles-dave_1_02-20-2025_191332 34:12

you have zero room and echoing 100 percent of what Lisa Marie was saying about kind of getting things together. I know the topic was supposed to be more on finances but it comes, all sorts of other things, right? It's the. The extra supplies are not covered. It's the Ubers, or even take my mom to Hawaii for her 70th birthday and spend a ridiculous amount of money because you know what, you're five years into your cancer battle, girlfriend, they only gave you six months. We don't do this. But that takes a lot of finances. Right. but then it becomes, it's all encompassing and then it's also what sacrifices you're willing to make to to participate these other things, right. And facilitate these other occurrences and it becomes like a balancing act. I much rather do certain things at home now than do what I used to do because now my values have changed.

lisamarie-collins_1_02-20-2025_191338 35:05

Yeah.

francesca-milles-dave_1_02-20-2025_191332 35:06

Wow.

LaDawn 35:08

This is all such great advice. Thank you each of you for sharing. I'd like to talk about something really important that people don't usually talk about and that's your relationships with the people that you love. Ray and Francesca I know you guys aren't married. Ray, I know you're in a long term relationship, but. given your guys's circumstances, you could talk about how caregiving has impacted your dating life. Has it influenced the qualities that you're looking for in a partner? What does that look like for you guys?

ray-fraser_1_02-20-2025_191338 35:40

For me, it's definitely was, like, very important, looking for someone who I always thought about how would this person be around my parents, especially because I grew up with older parents Amanda's awesome with my folks and just like very caring. And that is it's been huge. Because, even when we go to, visit my folks, I can, leave her with either my mom or dad, sometimes I'll have to, go and be at the hospital with my brother, for example, and on the last visit, she took my parents to church, helped get them ready, things like that. I think it's very important because, Some people, and it's no offense to them, they're not built that way. And you also want to, make sure, hey, if this was another life, if I didn't have, family maybe something else would work, but this is the reality. You have to make those tough decisions early on because at the end of the day, I know my family comes first, if I couldn't devote, time instead of going, on a vacation with the guys or something like that. We spend like a lot of times, going to visit my family, my parents in Connecticut. So yeah, I would say you definitely have to look for the right qualities. And also the qualities that you're not looking for

background 37:18

as

ray-fraser_1_02-20-2025_191338 37:18

well. Francesca, what have you seen?

francesca-milles-dave_1_02-20-2025_191332 37:20

Super blessed that my partner he's great. we were friends for years before. it helps because he knew my mom before her major stroke. So he knew the old her. Right. Or what she considers to alter because I know about four other versions of her, right? And so he is super caring. So we work together and we have alternative work schedules. So he's at home when I'm at work someone's always giving breakfast and someone's always going to be there at dinner. He allows me breaks, I got to go to the natty and he's baby, I got you. I'll take care of home, and so it becomes to raise point like those care these qualities that you're so blessed about, but I've never asked,

background 37:58

you

francesca-milles-dave_1_02-20-2025_191332 38:01

can't ask like when and the love that he now, they consider him their son, and it's all About love, but you need someone, that, understands this aspect of you and understands that, even when you're overstimulating, you're not going to stop.

ray-fraser_1_02-20-2025_191338 38:17

I think you make a good point. if you have to ask, it's probably not for them. Marie, I know you were about to jump in as well.

lisamarie-collins_1_02-20-2025_191338 38:26

I would say for my husband, he's always the last priority. And I hate to say that, but it's the reality on any given day, the first priority is my kids, my work, or my parents, depending on what's going on. And then I'm just like, you can take care of yourself, and also could you help me with this? I have nothing left to give, I'm sorry. I am grateful for a partner who understands that and supports me especially with our kids. For example, a lot of times I'll think I really need to spend some time with my parents because they haven't left the house all week. Right? And I really haven't seen my kids all week because I've been busy with work, but I can depend on my husband to take my kids to do something fun. And then I can spend that dedicated time with my parent. And I'm incredibly grateful for that because if it was not for that, It's literally impossible.

LaDawn 39:16

Yeah, that's so key for you to share. Thank you for making that point. Lisa Marie, you're in that sandwich generation that we're hearing a lot about. you're married, you have your own little family and you're also caring for your parents. I would like to hear how being a caregiver has impacted your own personal. Aging plan, has it impacted the decisions that you're making for yourself, planning for the possibility of needing long term care? Has it impacted how you're caring for your body? Are you exercising more? Are you eating better? Are making plans to live a healthier lifestyle as you age?

Lessons from Watching Loved Ones Age

ray-fraser_1_02-20-2025_191338 39:59

Yeah, I would say for me definitely working out and staying in shape eating better, I wear one of those like I'm not diabetic myself, but they have these, consumer, say glues, coast monitors, like where I wear the lingo one, it helps me control, what I eat nowadays, because I want to be able to like, say, age in a lot of ways, there's a similar path that my dad did being able to stay active I found with my dad, having hobbies was a Big, learning point he worked as a machinist for the department of transportation for a number of years, but he also liked being a landscaper. And when he wasn't landscaping, he loved taking care of his yard and garden. it keeps your mind going. in my day job, I work for, a private equity firm, I also try to do, a lot of mentorship for, startup companies, doing research. So yeah, just trying to, think about, what kind of activities Can I do even when let's say my full time career stops,

francesca-milles-dave_1_02-20-2025_191332 41:06

great advice. for me. It's less about the original question, but what I really heard was What am I learning through this experience, And, oh my gosh learning life by watching someone die.

background 41:20

It's

francesca-milles-dave_1_02-20-2025_191332 41:21

such an impactful thing. And it's a wide variety of how people approach similar situations. watching some of the fortitude or some of the people who are just giving up. Or some of the people who are living without regrets. I have an uncle that's in hospice now, and he has decided there's not one regret he's gonna have ever. just understanding that, that mentality, right? and then and just really just understanding what is what I value. And my values have shifted, right? What I feel is important, right? You talked about earlier about going on vacation with the guys. no longer important for me to go out with the girls or do certain things, Those things are no longer important. And it's really understanding, in retrospect, planning my life with that insight. That wisdom is just a blessing upon a blessing.

lisamarie-collins_1_02-20-2025_191338 42:16

Yeah, I mean, I would just say when I, when my parents and I first moved in together, I was struck by how difficult it was for me to watch a person age every single day.

background 42:27

that

lisamarie-collins_1_02-20-2025_191338 42:27

really took a toll on me. Like it was one thing to go visit them, help out for a weekend, and then come home and not see them for a couple of days, but just like the every day of it really took a toll. I, their life has shrunk so much, so quickly. And I can tell like my dad is surprised by it. You know what I mean? Like he's constantly making comments of who is this guy? Like, when did I become this old guy, but it's it's wearing on him. And I could tell he's, like in my mind, I still feel like I'm 22. He's so kind of like surprised that he has limited mobility and that he's so tired and that he's, at the doctor's office. five days a week. So for me, it's really been in terms of like my own health, just doing everything I can so that I age gracefully, so that I have as good a quality of life as I can for as long as I can. And then just recognizing that like when you age and you get old and you get sick, it comes quick, like quicker than you're thinking it's going to come. So really just try to, do the things And to recognize like the time that we're all living in now is these are the good old days, It's chaotic and it's busy and work and this, but these are the best of times and really trying to embrace that.

ray-fraser_1_02-20-2025_191338 43:33

Yeah, we at least Marie talk about like things Like when you look at your older parents, the car they bought. the TV set that they got that was so cool. None of that stuff matters. all that show a lot of it gets thrown away. It's gone. So that's the other thing. It's especially like the little arguments.

background 43:55

Right.

ray-fraser_1_02-20-2025_191338 43:56

The little arguments that you had 15 years ago that one nobody even remembers half the time that person's not even here anymore, it makes me think about the relationships I have now even at say work and things like that because I'm like, it makes you chuckle because like you're you think in the end, alright, what matters most is like how you treat people, will people remember you as kind of like a good person? Did you help others? things like that. Just simple basics.

LaDawn 44:25

Yeah. It sounds like your priorities have really been straightened through this process. I know that people are wondering about support and what community looks like for you. If you have support from extended siblings, aunts, uncles other individuals in your life, What does that look like for you guys? And if you don't have that What would you like those people to do?

francesca-milles-dave_1_02-20-2025_191332 44:55

I'll start. I am so blessed, so besides my partner who, who completely holds me down, right? He focuses on the things that I don't care about and it's slightly annoying because why are you focused on what I don't care about? And I realize, oh wait, if you didn't focus on it, nobody would. Got you. Thank you. Appreciate you. So, Ray, you had an argument? Okay. But besides him, my community in my neighborhood has just been so wonderful and so impactful. I think I shared a story before I met a woman and my local bar cafe a couple of blocks away from my old apartment. And she She was really unapproachable and but someone's Oh, give her a chance to talk to her and by the time she warmed up, she gave me a number. We exchanged like whatever. She's Hey, I'm sorry. I'm grumpy. My mom's in the hospital. I'm so sorry. let you have your me time. I get it, but I didn't get it right. Not two weeks later, not two weeks later. My mother was in that same hospital. On my support.

background 45:58

And

francesca-milles-dave_1_02-20-2025_191332 45:59

what did I do? I pulled out my phone, that woman that had one interaction with. It's the first person I called, the only person I called. I knew this woman two hours, right? But I know that was someone that understood exactly where I am. I didn't want to answer any questions. I didn't want anything. I just need immediate care. And I sent her a note and my note said Hey, what are you up to? She's well, I'm obviously at the hospital because my mother's sick. I'm like, not so funny story. So it's mine. She said, what floor? She came down, left her mother in ICU to come down and sit with me while my mother was in ICU. I know that one for two hours. And that's indicative of the family that I've created or that I've been blessed to be a part. And let's just stop. I didn't create anything. They just took me in. Right? Because there's no way that I could have been focused on being intentional about anything during that time. But even now, that same community will come over. So I started when my mom first got sick, I started hosting, I started doing holiday meals, right? She used to still cook dinner for Easter, Christmas, New Year's, et cetera, et cetera. But I wanted her to see that our family traditions will live on. So I started doing that, but it's my partner and I, right? Not much of a table. And so my, my, my community now comes, right? Those are the same community members that, I got to do Irish in the vineyard last summer that stopped by in rotation. One girl's a nurse. One girl is a mom, so she knows how to change diapers. And my other friend who is an MP, right? And then they just took turns and really took care of my family, without me, so I could have a break. Everything from the text, Hey, I just got there, or I'm on my way, so I didn't have to, to your point, right? I never asked. I didn't have to inquire. It was always in the forefront and because, it's always reciprocal on different, different levels.

background 47:59

But

francesca-milles-dave_1_02-20-2025_191332 47:59

you talk about support. I didn't know these people before. I didn't know these people two years before everything went down. I did not know these people. That's

background 48:08

incredible. Incredible. I'm

francesca-milles-dave_1_02-20-2025_191332 48:09

so blessed for that.

ray-fraser_1_02-20-2025_191338 48:13

I would like to add there's you never know who's really going to be there and step up in our family, it's our, my sister in law and she's the RN in the family. And, thank God she's there. My parents weren't that friendly to her. and they're hating and fast forward. She is the first one at the hospital with my brother, taking him to different appointments. thank God for my chart, right? we're always looking at all those notes and Yeah, like she has all the reasons not to be involved like we can go down the list of all the actions and She just has a heart of gold And we're lucky to have her. So I would say that's one of like our family, my family members that has just like really stood up her and my oldest brother, like really stood up.

LaDawn 49:18

That's great. That's good to hear. We are going to talk later in the series about caregivers getting more support and help from other people in the family, just so they aren't sort of carrying that load. By themselves. But a couple of you mentioned, you know that there were people who stepped up and did things without you having to ask them. But because I know that there are people out there who may feel that they have family members who are like you guys they stepped up, they're doing the caregiving and on the outside, it looks like they're doing just fine and they don't need help sometimes the opposite is true. You could use a hand. So for people who are watching, could you give us some examples of things that you would like people to offer to do? That would, sort of lighten the load. Maybe you will. You don't feel comfortable asking. Maybe you wouldn't ask, but these are things you would like people to offer to do.

lisamarie-collins_1_02-20-2025_191338 50:20

Well, I feel comfortable asking the first thing. Get comfortable asking right away. There was no, there is no pride in drowning. Ask. And, for my parents, I think the most helpful thing is just company. And I think they're probably sick of me and my husband and my kids sometimes, like they would like to see another face. So like when I, for example, travel for work, I'll call my sister or my aunt and say, I'm going to be gone these days and somebody will come over for lunch, right? And it's when they come over, it's like

background 50:49

that,

lisamarie-collins_1_02-20-2025_191338 50:50

it's a party, right? It's not just lunch on Tuesday. It's company, right? It's an outing. So I wish that people would, just come and spend time with my parents with without me there Take my parents out of my house without me there. Take them to lunch. Take them to a movie Something like that without me there and don't make me it and it's I'm not hosting You know, you are helping with this Helping me with them.

background 51:18

Yeah

lisamarie-collins_1_02-20-2025_191338 51:18

It's that's easy, right, it's like that shouldn't be that's not, I'm not asking you to do any medical work or anything. Just come and spend time with your loved ones.

francesca-milles-dave_1_02-20-2025_191332 51:29

And I'll take it the opposite way. At least Marie for me, it's give, show me care, be my friend, it's great that's your aunt, that's your uncle, that's all great, but what about your cousin and it's showing the person care, it's just showing up. It's Hey, we got your favorite thing. let's just, I brought dinner.

background 51:48

Yeah,

francesca-milles-dave_1_02-20-2025_191332 51:50

my

background 51:50

dinner

francesca-milles-dave_1_02-20-2025_191332 51:50

TV or hey, you want to grab a drink or hey, we're, there's this event happening. Why don't you join? I think a lot are made that caregivers have zero time, which is also very true, but equally true. They to have options. So invite them to things because you may be a part of a sweet spot that they can actually attend. Or that could be that one thing that they're doing for themselves. So invite them to things. Please continue to encourage them to, kind of step outside. But then don't be afraid to kind of jump inside the pool with them and say, Hey, girl, here's a float. Yeah.

ray-fraser_1_02-20-2025_191338 52:29

Yeah. And no one's asking them. I would say folks in those situations, especially if they're not folks that are usually around. Yeah. To come every week and do it on a consistent, every week type of basis. honestly, it can be a little triggering when somebody says Oh, how can I help, a little bit, because I think it's very rare, you're going to find those people. I think we all know the people in like our family who can really take like loads, like taking people to like the doctors, or even say Transcribed Taking people in their car, right? And cause I know like when my dad, if somebody's going to drive my dad, they got to put like some cardboard down on the seats. Cause you don't know what kind of day it's going to be, I think it just needs to be simple to start with. Just come over. There's no agenda. And we have those other folks in my family. Well, that's what they'll do every couple of months. They'll come over, they'll say hi to my dad. Hi to my mom, spend an hour or two there. And then, they might check in. But even the check ins can be kind of hard because they'll say Oh, how are they? Well, it's a couple months later, they're older, too. my brother not doing any better. My parents, my dad probably fell the other day. Who knows? But they're hanging on, right? But I would say, LaDonna, if people are looking feel like there's somebody in their families that is say, taking the load. Just go over the house. Just offer. Tell them, Hey, you're gonna bring by dinner. I bet you so many of them will be overjoyed just to not be able to have to think about that one thing for that one or two hours.

LaDawn 54:26

Thanks for that advice. I'm sure that's gonna help a lot of folks. I would to know. I mean, this is Notre Dame. So, I have to ask, what role has faith played for you? During this time?

francesca-milles-dave_1_02-20-2025_191332 54:39

Any of you? Francesca,

ray-fraser_1_02-20-2025_191338 54:40

you want to go first?

francesca-milles-dave_1_02-20-2025_191332 54:42

Yeah, you know what's so funny? I had I had hitched my entire purpose in being on my mother's health care rate. So whenever something had changed negatively, I took it personally. And so when you ask the question of faith, the only thing I can think about is when my dad told me, he's baby, you're not God. You don't have any control of this. And just realizing that you have zero control of the situation, just really leaning on your faith to get you through that day, that minute, that hour or that appointment or the post appointment, which is sometimes worse than the appointment. Right. So I just really think it's more of for me faith is really a paramount. But it's also living in that community and really being really serving and understanding what being a servant is, really just diving into that piece, you can't say, God, use me if you don't want to be used, right? That part,

lisamarie-collins_1_02-20-2025_191338 55:44

right, Lisa, right. I think you said it perfectly. I don't have anything to add.

ray-fraser_1_02-20-2025_191338 55:50

Yeah. I. I would say one of the things dealing with my aging parents, you can have good days and then that's the thing that has brought me like closer in my faith is because I can't make sense of any of this stuff. I'm a good day. And then you do all the things you're supposed to, right? You give them the food that they're supposed to, you're supposed to do a walk. And then all of a sudden. Things are 10 times worse

background 56:17

and then

ray-fraser_1_02-20-2025_191338 56:18

your kids can't tell you anything that they just say. Hey, that's how that how it goes. You're just aging. There's no logic to a lot of it. So you feel helpless a lot of times and I've really put a lot in a faith. I'm really also thankful for, our university. Just because talk about another thing that gets my parents happy is just whenever Notre Dame's playing Like my parents they call it Notre Dame They'll all gather around the TV My dad they don't even understand football They don't.

francesca-milles-dave_1_02-20-2025_191332 57:02

There's someone there. There's someone

ray-fraser_1_02-20-2025_191338 57:03

exactly. Exactly. And they love what the university stands for. And so every fall, it's a big deal, even in the spring or like here in the winter when the women are playing. It's a big deal for them. So those it's the university's especially in this time when my parents are like aging has really helped. a lot whenever they're on the TV.

background 57:31

Well,

Words of Encouragement for Caregivers

LaDawn 57:32

well, thanks you guys. You have shared so much wisdom with us I'm so grateful to close us out. I really like for each of you. If you have some words of encouragement to share for people who are going through this journey now, What would those be?

lisamarie-collins_1_02-20-2025_191338 57:53

I can start. I would say if I have a really tough day as a caregiver, it was not anywhere near as tough as the day my parents has had that day. And I try to always keep that in mind that I'm so grateful that I get to be the caregiver and we all know that our parents are at the end of their life. And when this is all said and done, my number one goal is to look back and to think like I cared for you well. I loved you, I made you feel loved and happy and as comfortable as I could, and not have any regret with the way I treated my parents during this difficult time. That is my goal, and that is what guides me every day.

background 58:35

Thanks.

ray-fraser_1_02-20-2025_191338 58:37

I'd go following that one up, I would say give yourself a lot of grace. There is no roadmap here and then also know that pixels, knowing that you're not the only one going through this, there are others out here and we all know that it can feel very lonely and very personal. Just remember to breathe and take it 1 day at a time. Crying is not a bad thing, right? Being vulnerable is not a bad thing. And yeah, so those are some of the things that I would say.

francesca-milles-dave_1_02-20-2025_191332 59:14

Great. Thanks, Ray. And I think those are amazing things, Ray and Lisa Marie. The one thing I would suggest, and I don't practice it as much as I should, but find, carve out space for you. Because so easy to lose yourself and you're gone before you even notice that you're starting to slip away. So if you feel like you're slipping away, you're already gone, right? So the way to recapture that is to find, it's difficult because time is, a limited resource, right? Oftentimes, but. You can carve out 20 minutes, not even a half hour, like

background 59:51

20

francesca-milles-dave_1_02-20-2025_191332 59:51

minutes and just do something. Even if it's a plain wordle and then your connection or whatever you do, just give yourself something so that you don't become resentful. You have to carve that out. early and quickly, and even if it's bringing them along and then they get parked somewhere while you do something else, right? Safety, of course, right? But you have to figure out a way to care for yourself because if you care for you and you set that standard of what care looks like for a caregiver, no is going to be able to follow and care for you because you're not showing them how.

background 1:00:29

Yeah.

francesca-milles-dave_1_02-20-2025_191332 1:00:31

And I know it's easy to say and very hard to do. But for me, especially, my mom had an ostomy bag. I couldn't leave her for more than four hours for a year a half. Or it was just pandemonium. It was just worse, right? But even with that, I would, I had to figure out the timing, right? I'm okay, we just changed the bag. Weird stuff happens at the beginning. But I have a good 15, solid 15 minutes that I can just disappear and come back a much better version of

background 1:00:59

myself.

francesca-milles-dave_1_02-20-2025_191332 1:01:02

a much better version. And without that, you start slipping away and you start becoming resentful. And then they feel that and then they become, they don't want to be a burden. And then it becomes, you don't want to go there. Just find space for yourself and understand that you have to care for the caregiver.

background 1:01:24

Yeah.

francesca-milles-dave_1_02-20-2025_191332 1:01:26

I think it's also just one one thing that I want to share. I think, we all talk about pouring out of our cup, empty, but you guys really, and this is best piece of this really helped her my whole mind around with Marie, you telling me about them having a worse day than you're having mind blowing. So thank you for that advice. it was, people thrive over your abundance. you're deleted, no one has anything, no one has enough. So you gotta really focus, care for them, but hey, you gotta care for you too. And you have to remember, Lisa Marie, I know you were talking about your husband being at the bottom of the party, but you didn't mention yourself at all. You know what I mean? And when we talk about that, we gotta figure out, just carve out just some time. to hide. I hide,

background 1:02:15

I

francesca-milles-dave_1_02-20-2025_191332 1:02:16

live you. I have a hiding spot. No, no shade. find a place to hide, Find something that you can do that's not super involved or elongated. I to teach myself something new, kind of tap it into what's always been kind of keep me engaged. I can learn about it, 20, 30 minutes spurts at a time, but at least I feel like I'm upskilling myself, right? And so it's just really finding something that will make you continue being purposeful outside of caregiving.

ray-fraser_1_02-20-2025_191338 1:02:49

Yeah, you still got a life to live.

francesca-milles-dave_1_02-20-2025_191332 1:02:52

Yep.

ray-fraser_1_02-20-2025_191338 1:02:52

You still have your own life to live at the end of the day. You can't, it's easy for it to all consume you, but you also got to remember that you have a life.

francesca-milles-dave_1_02-20-2025_191332 1:03:04

Because most, many of us, and I am speaking particularly about myself, know, elders that were taking care of people, that took care of people, that took care of people, took care, they were taken care of. Don't be that person. They don't even want that for you.

LaDawn 1:03:20

Wow. What, what a great note to end on. This has been an insightful discussion. I'm so grateful to each of you for joining me. Thank you for sharing your heartfelt stories for so open with us. to our audience, thank you for being with us today. We hope that you've enjoyed this discussion and that it leaves you with a renewed sense of support and hope. This series is free and open to all, so please feel free to share with your friends and loved ones. For more on caregiving with dignity, visit us at think dot Indy dot edu. We'll see you next time when we are joined by a seasoned therapist and relationship expert, Danielle Bouquet, class of 1991, who will share some mental health and wellness tips for caregivers.